Tuesday, December 30, 2008

Damn Hot

So Santa brought Maya a gift card from REI for XMAS. The note from Santa said that he knew she wanted a new bike, so she could take this card to REI to pick the bike she wanted and to get it fitted out.

Sweet.

So we went and she picked the bike I knew she’d pick.  She was on fire. Hopping around, all excited (well, we did go to REI after the American Girl store – so it was a super Maya shopping morning).  Just Daddy and his daughter.  

While the ‘bike dude’ (who fit the bill completely) was fitting out her bike. She was talking non-stop about the outfits she bought at the American Girl store. His mistake. He told her she could come back and watch while he worked on her wheels. 

He now knows that Marie (Maya’s American Girl doll, if you didn’t know) is a ‘just like me doll’ and that she really is alot like Julie.  And Marie has Julie’s bedroom set, which plays real records from when Mommy and Daddy were little kids, and Marie sleeps in the bed, but Maya’s not happy about her bed set being in the closet right now while Mommy and Daddy try to sell the house.  

The dude did his best, but I’m pretty sure he did not keep up.

Anyways, the kick stand he wanted to put on didn’t fit just right, so he had to get one outta the back. It would take about fifteen minutes.  So we wandered the store.  Like when we went through this exercise with Super D in February, we went to get into the tents. Maya liked this as much as her bro’ did.  A REI sales chick wandered up, and she had to either be high off of peyote, or she was actually trying to sell an individual sized tent to a seven year old who ain’t buying.

Maya: Mommy won’t sleep in a tent.  She only sleeps in hotels.  She doesn’t like bugs.

REI Chick: Well, this tent has great ventilation for air circulation (like Maya understood this…I barely understand this) without letting in any bugs, due to its tight, but very breathable screen system).

Wait for it, wait for it, wait for it….

Now, say something completely inappropriate Maya!

Maya: Yea, Mommy won’t sleep outside. It’s too damn hot.

We have a winner.

And the chick wandered off. She knew she was outclassed.

Maya was so excited about the bike that she actually rode it out of the repair shop.  We actually caught her (me and Bike Repair Shop dude) around the time she started to get to the climbing gear. She thought the walking track around the store was a riding track.

Juice, and in December in a store, it isn’t too damn hot either.

I love her channeling her inner Kim.  And all of you who know Kim, can hear her saying every damn day that it is over 90 degrees in Atlanta, or Dallas, or soon to be Lexington….

I love ‘em both….
Posted by Jerry in 01:39:02 | Permalink | Comments (3)

Sunday, December 28, 2008

Christmas Photos

Getting Ready to go to church….

Maya when she went to see the Nutcracker at the Fox Theatre

Candy in the stocking!

Presents, presents, presents….

Mini Lite Brite….

Maya and Daddy (excited that Santa gave her the REI gift card for her new bike….)

This is the big gift from Nonni and Grandpa…the box was filled with like, 8686 new super heroes!

Movies!

Once opened, the playing with the toys must begin (look behind them, who is supervising from the leather chair…    
Posted by Jerry in 14:22:22 | Permalink | Comments Off

Is This Actually Happening

Is this the end of the sheared sheep?

Happy Holidays ya’ll.  I took a few days off as I wanted to spend some quality time with the fam – don’t worry though, I’ll be posting some holiday pictures soon.  

My folks gave me a gift card from Brooks Brothers for the holidays.  They know I’ll put it to good use.

I’m nothing but a bunch of odd sizes.  Huge chest.  Short arms.  Short legs.  Chubby torso with big thighs but somewhat small hips with no butt.  I’m not the best proportioned guy in the world.  So before I head out to a store, I call to make sure that they either have it in stock in my size, or, that they can get it to a store in my size quickly.  

Jerry:  Do you have a Harris Tweed herringbone two button jacket in either tan or black and white?

Brooks Brothers Rep:  We aren’t ordering anymore.

Jerry: Do you have a camel hair in tan or chocolate?  

Brooks Brothers Rep:  We aren’t ordering anymore.

Jerry:  Okay…tropical wool pleated slacks in tan and in heather gray

Brooks Brothers Rep:  We aren’t ordering anymore.

Jerry: Are you guys going out of business? (NOTE – I’m not on with the local store here in Atlanta, I’m on with the 800 #)

Brooks Brothers Rep: I don’t think so, we just aren’t ordering anymore products. 

Jerry: Okay, I would like to order two windowpane button downs….

Brooks Brothers Rep:  Those are backordered and I can’t see when we are due to get them in stock.

So I just ordered three shirts that I know would be in stock, white, non-iron traditional fit button downs.

I have to say I know that Brooks Brothers has been on a growth spree over the past few years – airports and expanding their stores. I just wonder if this American institution is on the ropes…they aren’t making their numbers or are too extended.

For me? Well, this is extremely sad as it is basically the only store this weird body shops at.  I know exactly how every jacket, suit, sock and shirt fit.  I’d hate for that to go away…but these days, who can say.  I guess we’ll know here soon when they are out of white button downs.

Well, I guess this isn’t as big a deal for Demetrius – it’s not like the store sells super hero tee-shirts that he’d want.
Posted by Jerry in 03:12:11 | Permalink | Comments Off

Tuesday, December 23, 2008

Grandpas and Demetrius

Periodically when I’m talking about the kids with my dad, he’ll say something profound.  

Grandpas do this.  

Sometimes though, it takes a special Grandpa to be profound about his autistic grandson.

I mentioned that Demetrius was organizing my day for when I get back to Alpharetta, that he had it planned that we’d go to McDonalds and run some errands. I chuckled.  Dad didn’t.

Instead, my dad said to me last night, “That’s his way of bonding with you, spending time with you. When he has a plan and it is something he wants to do like that, he is comfortable and happy.  He’s comfortable, and happy, with you, at that time. This is what he does.”

I’ve thought alot about his saying that to me today, and of course he’s right.

Since Demetrius has been diagnosed, the two people who seem to understand him best are his two grandpas.  Both quiet men, but very different.  Kim’s dad, Jim, a big ol’ farmboy that’s a gentle giant until you get his hair up…what’s left of his hair.  My Dad, quiet and objective, a thinker and wise man, patient as anyone I’ve ever known.  Both are good men from muscle to marrow.  Both love Demetrius for what he is, not a minute have they ever loved him more because of what he is not.

Jim’s got two other grandsons, one is a champion athlete, a star in Central Kansas.  The other is just budding into something of his own – as only a 14 year old can. Who knows what he’ll be in a few years.  I think probably something exceptional, exceptionally unexpected.  

So I wonder what he thinks of his third grandson?  The one who doesn’t say too much but wants to play on his computer, and go down into the basement, where he works on his advertising specialties. Doing TV talk and sometimes flapping his hands (albeit so much less so than he used to).

I sometimes think that they have a bit of a special relationship.  The two of them spend alot of time…well, just being together.  They don’t talk – but since they are both gentle and a bit shy, they don’t have to.  I’ve witnessed the two of them having a good time just ‘being’. 

With the type As that Demetrius has in everyday life (Kim, Maya and me), maybe this is what Super D needs. Someone that can be just as quiet as he can, who can sit and read a book sitting next to Demetrius as he plays on the computer – making Demetrius much more content than I think I ever could with my over planned, what’s the next goal in life drive. 

Once we were walking along the quiet streets in rural Kansas when the boy was much younger, maybe 4 years old…and he was running ahead of us down the street, flapping a bit and holding his toys in each hand.  Jim sensed that I was getting a bit nervous.  He just said to me, “You know it is okay, don’t you?  He’s going to be just fine.”  I thought to myself, “maybe.”  And I still think that, “maybe.”  But the maybe at times changes from whether he’ll ‘maybe’ be fine in life…to maybe I’ll be okay accepting a few things that I haven’t yet accepted.  

I’m now not so sure Jim wasn’t talking about Demetrius, and much more about me and what I needed to realize…and am still trying to.

We tease my Dad that he might be on the Spectrum.  I promise all of you right now he’s got next summer planned out for our week at the beach.  It is 20 degrees outside right now, but when it is 90 degrees and just as humid, he’ll be thinking about when he can see the kids during the winter.  He likes plans. He likes yellow legal pads.  He likes to have it all worked out to the best it can be.

My dad was the first person other than Kim to tell me he thought something was ‘different’ about Demetrius.  The family story is that I told him he was right. He was deaf.  No one would believe me.  

To prove the point I brought the silverware out of the drawer and dropped it behind him as he watched Toy Story.  D never noticed.  Dad never responded or agreed – or disagreed for that matter.  What I failed to realize is that he realized that regardless of what we thought, something was wrong.  I was upset that noone believed me and my non-scientific tests on my son’s auditory reactions. He was concerned that I was missing the bigger point.  

He let me vent, and then he waited until we (mostly me) got our arms around more testing.    

D’s not deaf.  I was deaf to the real issues at that time.  My dad remained patient and knew I’d get there. 

He approaches all of the issues two-fold, what do I need from him as my father – his son dealing with his special needs child, and what does Demetrius need from him. He’s never cared that Demetrius can’t handle sports or still has the interests of a four-year-old at times.  He revels in Demetrius’ happiness, not in what he wants his grandson to revel in.  

He seemed so happy last year to be watching Demetrius at the soccer game regardless of whether or not he played.  He was happy that Demetrius was outside, I think, trying something new.  Maybe he sensed how hard it was for Kim and I to watch Demetrius, when he won’t engage or just let the ball go by and went into his ‘bubble’.  He knew that we want Demetrius to desperately ‘interact’ with other boys, as the other boys literally, not figuratively, seem to be running past him in every way possible.

Once the game ended, he just asked Demetrius if he wanted to go get breakfast and then go to Target. All wins in every way for the boy.  Grandpa just understands this.  Grandpa understands the overall effect creates a good day for the boy – the stress of the soccer game is balanced out by a trip to IHOP and new action figure, and then watching some SpongeBob.  Much like my father-in-law, my Dad can just sit with Demetrius.  Did I mention they stayed at a hotel that night, went swimming in the indoor pool and ate pizza, while Demetrius watched movies on the ‘little’ portable DVD player?  

Demetrius told everyone it was a great day – Grandpa knows.

Maybe in 20+ years I’ll be able to understand a bit better the calmness they bring to dealing with the boy and his ticks.  Maybe I won’t because being a parent is so much different than being a grandparent.  

MAYBE, I should just go and sit with Demetrius while he fumbles with his Happy Meal toy at McDonalds, versus trying to get him to go play and interact with the other kids who scream and yell as they climb around so effortlessly.  Maybe I should think about what makes him happy periodically, rather than just what his goals should be for interacting and ‘not being autistic’.

That would be hard for me.

Thank God for Grandpas, it isn’t hard for them…. because they make it so easy for Demetrius to be Demetrius.
Posted by Jerry in 01:04:28 | Permalink | Comments (1) »

Monday, December 22, 2008

Radio Silence, It Seems

It seems like it has been a long time since I’ve blogged from down deep.  Maybe (no, it is the reason) it is because I started a new job. 

I sure miss the kids and Kim.

The problem with the weekend trips is that they go way too fast.  So I am really looking forward to the Christmas break. I’ve bought a few presents for the kids and Kim (and some Kentucky bourbon for some of our friends) and can’t wait to get back into the swing of being ‘daddy’.

I miss everyone and the dog who lives in our house.  Especially on a weekend day like today, where it is cold and I’m by myself.  The chatter of Maya, Kim trying to tell me what to do, Buddy demanding a tummy rub… and TV talk.

I never thought I would say this, I miss TV talk, a lot.

I know much of it is that I miss Demetrius.  That’s given. Every parent that loves their children misses them when they aren’t around.  But TV talk, is, as I’ve realized not being around it, the voice of our household. It is the voice of the Grasso family.

Right now Demetrius is probably signing a song from Charlie Brown Christmas, or reenacting some sort of Boris Karlof-esque scene from the Grinch Who Stole Christmas.  When he is nervous the TV talk is more high pitched and constant, it’s cadence is also faster, and almost always is a fall back to something we have seen umpteen times on the television – like SpongeBob.

When he’s excited it is also quickly said, but the variance of it can be astounding – SpongeBob one minute, Ben Ten the next, copycat-ing Mommy or Daddy with a reassurance that Nanny and Pop or Grandpa and Nonni will be here any time now.  

When he needs reassurance from his Mommy the TV talk can sometimes take on a needy quality.  He often goes non-stop until she comes in and snuggles him for a minute, and then he kicks her out of his room and he’s radio silent.

But what is hard to explain is how quiet it is without the backdrop of TV talk when you aren’t around it.  Sure, I can, and have, said that about Maya’s chattering, but she is always trying to tell you something.  Demetrius’ TV talk is the sound of my family, because frankly, almost every family with a girl has a chatty one.  Autism has defined us in an unique way, therefore, so has TV Talk, it seems to me. 

And I miss them and the noise.  I never thought I’d ever miss it as much as I do.  It will be good to see them again in a couple of days.

Posted by Jerry in 01:01:51 | Permalink | Comments (2)

Sunday, December 21, 2008

Autistic Boy’s Family Wins Big Case

Click here…..
Posted by Jerry in 01:56:32 | Permalink | Comments Off

Saturday, December 20, 2008

The Fury and The Fit

Periodically, things are different on the phone then they are in person. It can give you some insight when you aren’t reacting emotionally in the room.

Maya has always been a bit obnoxious when Kim’s on the phone.  But she’s been going nuts when Kim has asked her to clean her room. Big fits.  Screaming.  I assume it is because it is the natural reaction we all have to cleaning our rooms. 

She’s not the first or last.

But I hear her getting so worked up, “DEMETRIUS MESSED MY ROOM UP!”
I don’t doubt that Demetrius played a part, but I don’t think he made the whole mess. But what I do think she’s right about is that he doesn’t clean up her room.  He gets away with it (even if he has to clean up his room) and it is frustrating.

But what I do think is that she’s frustrated as all sisters are with brothers who enter the inner sanctum of ‘her’ room, but because of his condition, he gets away with a little more than the other brothers do.  

So when he makes a mess, she’s really, really frustrated and there isn’t much she can do but yell at him that he’s not allowed to go in her room, ever again.  Which to Demetrius can mean, I dunno, five minutes?

I think what we need to realize is that sometimes we do need to help her pick up her room when he makes a mess, and quit putting all of it on her shoulders all of the time.  Maybe a little understanding.

Of course, how do you know when she’s just trying to get out of cleaning her room and get a little help?

Well, a nice thing about her being type A is that the color of red she gets when she throws a fit can tell you where the line of the truth is…

Any of you guys get this with your neuro-typicals?

Posted by Jerry in 23:21:46 | Permalink | Comments (2)

Friday, December 19, 2008

Parents of Autistic Kids Are Pessimistic – According To Story in Education Week

Parents of Children With Autism Pessimistic, Survey Says

By Christina A. Samuels

Education Week

Washington

Parents of children with autism tend to have a more pessimistic outlook about the educational resources available to their children than parents of children without disabilities, according to a new survey.

The parents of children with autism are also more worried about their children’s health, future financial independence, and community support. However, there are differences among families dealing with autism, with the parents of children with Asperger’s syndrome, a less-severe manifestation of the disorder, indicating that they generally had more positive feelings about their children’s futures.

The study was released today by Chicago-based Easter20Seals and MassMutual Financial Group, in partnership with the Autism Society of America. MassMutual, based in Springfield, Mass., offers financial and life-planning services to families of people with disabilities.

“The results were not a surprise to us at all,” said Lee Grossman, the president and chief executive officer of the ASA, headquartered in Bethesda, Md. “There are tremendous unmet needs for these people and their families.”

Autism is a developmental disorder characterized by repetitive behavior and impaired social interaction. There are a number of disorders on the autism “spectrum,” including Asperger’s syndrome and “pervasive developmental disorder-not otherwise specified,” which is a diagnosis given to a person who exhibits some, but not all, of the characteristics of autism.

Answers to the online survey were gathered between June 16 and July 17 of this year, and included responses from 1,652 parents of children under the age of 30 with autism and 917 parents of typically developing children. For many of the questions, the survey was able to break down the answers into parents of children with autism, parents of children with Asperger’s, and parents of children with PDD-NOS. No margin of error was available, according to Harris Interactive, which=2 0conducted the poll.

Preparation for Life

About 70 percent of parents of children with autism said they were concerned about their child’s education, compared with 36 percent of parents of typically developing children. About 56 percent of parents of typically developing children said they believe their children have “received education to adequately prepare him/her for life,” compared with 19 percent of parents who have children with an autism-spectrum disorder.

However, breaking down the results by diagnostic category showed that parents of children diagnosed with autism were the most affected, with 74 percent saying they were concerned about their child’s education. About 56 percent of families affected by Asperger’s felt that way.

Eighteen percent of families with autism said their children’s education adequately prepared them for life. Parents of children with Asperger’s were slightly more pleased, with 20 percent saying their child’s education left him or her adequately prepared for life.

In the survey, about 50 percent of parents of children with disabilities said their children spent all or most of their time in special education classes as oppose d to “mainstream” classes. For children with autism, parents reported that 64 percent were always or mostly in special education classes, compared with 45 percent of children with PDD-NOS and 21 percent of children with Asperger’s.

Schools play a critical role in the lives of children with autism, because for many, it’s the first place that may suggest that their child has a developmental disorder that needs further investigation, said Barbara Gaither, a parent who attended the release of the survey results. School is also the primary provider of services for younger students, she added. Her son Scottie Gaither, 9, has autism and is the Easter Seals’ 2008 National Child Representative.

Though Ms. Gaither said she is happy with Scottie’s school in Columbus, Ga., “I’m still a little worried about middle school and high school.” There tend to be fewer services for older children, she said.

Patricia Wright, the national director for autism services for Easter Seals, said the survey will be used raise awareness of the issues faced by parents of children with autism.

“The one consistent message Easter Seals hears from the families we serve, after the initial apprehension and anxiety of learning their child has autism, is an overwhelming concern about the lifelong supports their child with autism may need to be independent,” she said.

Posted by Jerry in 10:41:22 | Permalink | Comments Off

Worth Listening To About The Holidays

Free time/Unstructured Free Time….Oh Lordy, this is D’s big issue.  Listen

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.  I wonder if anyone is alot, or just a little like me, when Demetrius finds out the truth about Santa. He is so believing….anyone thinking about this stress…which will be alot on him, but probably more so for Kim and me!

Posted by Jerry in 02:46:09 | Permalink | Comments Off

Wednesday, December 17, 2008

Advice Out There…

One of the online autism group’s I’m a member of posted this:

I’m just wondering if anyone has a similar situation and what you do to cope.  What do you do when your family and sometimes even friends break your heart as much as the Autism does?  I’ve been coping with Autism for over 13 years now, but I still seem to get my heart broken too easily.  I worry because no-one in my family really has relationship with my son.  Nobody is even close to him but me and his dad.  I try to arrange good social situations for him, but him having friends is very limited and many times family doesn’t even show up for his birthday or any other important days for him.  I worry that if me and his dad were killed who would take care of him?  The basic truth is nobody really wants him.  One sister says she would but she really doesn’t even know him and we haven’t been able to finalize a will because we feel like there’s nobody to leave him with.I know I should be tougher to things like this now but it absolutely breaks my heart.  My son had to pull a laminated picture off a piece of paper that said he wants to have a party with his family for his birthday and half of them didn’t even come.  It still hurts me so bad and I feel stupid.  I need to get over this heartbreaking pain, but it stiil hurts me so bad.  I just want him to have a happy life regardless of what he is ever able to accomplish.  I want him to have people in his life that love him and see the person that I see.  Am I just being stupid or what?  I want it to quit breaking my heart so much and I just don’t know what to do.  Any advice?

I think we’ve all been here in one way or another.  That said, there was some good advice given on how to handle.  This included:

You’re definitely not alone in your situation.  My wife and I have also struggled with the fact that we may have to look outside our family for someone to raise our kids should something happen to both of us.  Many in our family refuse to even accept my son’s diagnosis of being on the autism spectrum.  It’s unfortunate that it often takes a parent of a special needs child to understand the anxiety and pain you’re facing.

I strongly recommend that you and your husband do everything you can to complete your wills.  The last thing you want is for someone else to make these decisions for you.  It’s an important decision for you, and a great responsibility for your selected guardian.  You need to make sure you feel comfortable with them raising your child, and that they are willing (and able) to care for them (this is even true for non special needs children).

I agree. Other advice given included: 

I think we all go through things like this, so you are not alone.

1 – the pain never will go away, you just need to find a way to cope and deal

2 – Don’t focus just on family.  There are others out there.  Now, can you write them in the will? Maybe/maybe not.  You need to get the will written though – if you get hit by a bus tomorrow, do you want him to be a ward of the state? No.  So get it drawn up.  You need to make the sister aware of your concerns (if you haven’t) and then be proactive that she gets to know your child.  Vacation there, answer questions, and put up with the pain and learning lessons that will be needed as everyone grows together.

3 – Friends.  Our son never gets invited to birthday parties, and the only time a friend spends the night is when we invite one over.  We involve him in many of his sister’s group activities, and we have other special needs friends (though they play with each other like cats being herded) we do things with other families. Is it forced? Yes. Is it good for both parties? Yes. And who knows, maybe a semblence of a friendship for the children emerge.


I think we all feel isolated because of our special needs children, and unfortunately, we find that those we want to lean on, don’t want to be leaned on. It is up to us to find a way, a new path if need be, to reach out and become part of a community.  It might not be the one we pictured, but neither did any of us picture have autistic children in our lives.

We just have to deal. 

Be strong, but also, find a nice strong pillar to lean on, because sometimes even the strong get a bit tired….

Posted by Jerry in 11:00:36 | Permalink | Comments (1) »