Wednesday, May 31, 2006

Birthday

Today is my birthday. While that is really not that important to you or pretty much me, these days (37 is not a seminal birthday, like 18, 21, 30 or 50) are so important to the kids. They love the birthdays.  Example – talking about my birthday as a great way to segue into discussing Maya’s 5th birthday party in DECEMBER (we are leaning toward a ‘My Little Pony’ party) and Maya’s birthday party for when she turns 10 years old. This will be a Bratz party.

Demetrius just wants to know what I’m getting him for my birthday.  I mentioned to him that he was supposed to get me a present. He then asked for new Super Man PJs for my birthday.  He also wants white (vanilla) ice cream. 

So I think these are the best things about the birthday.  Its about their reaction and excitement.  As an adult, I miss the pure joy and anticipation that came from birthdays. Now, it is more like, “You gotta be freaking kidding me that it costs that much for a fifteen inch sheet cake with SpongeBob on it!” Don’t even get me started about the ‘thank you for coming gifts’.  Huh? I thought the whole birthday party theory was: I invite you to my party. You bring a present.  I then get invited to your birthday party and give you back your crappy gift. Wait, no – I’m sorry I give you a toy too. Yea, that’s it.  The regifting is learned later, probably at the same moment when birthday parties cease to be pure magic.

I do absolutely love the kids at parties. They get into singing Happy Birthday. 1 in 5 actually know the words.  They all want you to open their present, and the one that is the biggest. Some come to you half opened. Who can wait for you to open your present…when it is just sitting in the car seat next to your friend on the way over to your house.

Its pretty comical all the way around. The special needs ones are funny. One kid can’t eat milk products, another anything with wheat in it.  One kid won’t touch food that touches other food, and a few won’t eat anything orange or blue (only birthday cake is blue – there is not a natural food in the world that is blue…so how a kid comes to this rule is beyond me…might say something about Mom and Dad’s cooking though).  One kid sang happy birthday while covering his ears.  Then thanked everyone for coming to the party. It wasn’t his party. But the good manners were impressive. 

I could just not go, like a lot of dads, to these parties…but watching the kids have so much fun is just so darn entertaining.  It doesn’t matter if it is at a house or a bounce house place (all the rage in Alpharetta) they are just a hoot….

The best one? Well, we went to one where the thank you gift was a live goldfish and some food. But that’s a story for another posting….

Posted by Jerry in 22:03:57 | Permalink | Comments (1) »

Tuesday, May 30, 2006

Grandparent Performance

Good morning.  Thought I would take a few days off for the holiday.  We had my folks in and it is always a blast. This trip was especially busy as we went to the Botanical Gardens, swam, went to the park, ran a few miles…good stuff. 

One of the great, great things about trips with the grandparents is how ‘on’ Demetrius is.  He really interacts with them because, it seems, he knows he has their full attention.  Example: While we were looking at Orchids, Demetrius turned to his grandfather and said, “C’mon Grandpa, lets go outside, I need to run.”  Instead of just taking off, he actually chats up the adults. 

I don’t know if there is a medical term or name for this affect – but when we take longer trips, it begins to wear off, we have seen him slowly become less responsive on when we are with the grandparents for long stretches.  I suppose, if we lived closer, this is how it would be.

That said, the crux of this post is a positive one – he is so on with his grandparents, you can just see how much progress he has/is making in his social and communication skills.  However, the down side is that they don’t see him that often, so they don’t see his bad days as much, which makes it a bit harder for them to frame what we tell them on the phone.  I suppose this is a nice problem to have. I’ll take being on for the grandparents any time…now if we can just keep them coming into town every two-to-three weeks, which would be perfect! (Well, for Demetrius…I don’t know if we want to play host and hostess that often…)

Posted by Jerry in 16:40:47 | Permalink | Comments (4)

Thursday, May 25, 2006

Batman and Pink Sunglasses

Oh, what to get the kids on a trip out to California.  Kim’s right, I don’t need to get them something every time I head out of town, but I like to on these longer trips.  So what to get Maya?  Believe it or not, sometimes she’s easier.  On this trip – I got her some chocolate chapstick from a store called Lush.  They make handmade soaps, shampoos, etc…out of Vancouver, Canada.  Kim discovered them while we lived in Seattle and they have a store here in Pasadena, so it all worked out there. We were also in Anaheim shooting on Downtown Disney some broll, so while there I got her some pink and rinestone sunglasses from a store called Libby Lu..very girly-girl that she loves. Total cost, $11.00.

For the boy, well, it worked out this way – a bit harder. First, there is a Lego store on Downtown Disney and they had a giant Batman there, about twenty feet big, showing off the store’s new Batman Legos (see below).  He got a Batman and Batmobile, and also Superman ‘beginning reader’ based on the movie that is coming out this summer.  It is a book he’ll enjoy, that I hope, begins to transition us out of picture books into some ‘bigger kid’ books this summer.  So it will achieve two goals. Total cost, $14.00.

So the kids got great gifts they’ll love for $25.00.  I wish I could do that for Kim and myself, and get the same level of enjoyment those two get from gifts.

Posted by Jerry in 15:53:56 | Permalink | Comments (2)

Bullies

I know I posted the other day about bullies, so I went to some Autism message boards to see what the subject matter is on it and dealing with it.  Unfortunately, not alot.  Frankly – most of the posts were (surprise/surprise) about middle school kids and a child that had made a few friends, and because of the special needs, he/she was eventually kicked to the curb by some normal kids. This is just probably going to be ugly, and I think another very painful time as a parent of a special needs kid.

But then I thought – isn’t this tough all around. Is it any worse for the regular kids that find that their friends from elementary school are no longer friends with them? Some of it is being cruel, sure – that’s just life, but some of it is diverging interests and wants.  Someone wants to play football, someone wants to be in the band.  And so it goes.

For us parents, this is probably in all of our top fears about the kids.  And certainly, as a special needs parent, in our top two or three.  Our kids just sometimes aren’t equipped, physically or mentally, to fight back or accept the situation.  The hope is the bullying doesn’t become ridicule.  And probably more of it goes on than we are even made aware of by our kids or other adults.

So what’s my point? I scoured some message boards and there was nothing there that was a silver bullet, or really even a roadmap…but my gut tells me that if we are active as parents getting our kids into programs, etc…that they will be able to better deal, especially those of us with high functioning SN kids that will come across, and have to deal with, this issue. If we can broaden their social horizons and understanding, then maybe, just maybe, they’ll be better suited to handle a friend that abandons them because they are weird or are picked on by some older child.

Any thoughts? I know one person that posts anonymously worries about this with his/her family. 

 

 

Posted by Jerry in 00:13:48 | Permalink | Comments (1) »

Tuesday, May 23, 2006

Autism Everywhere

Here at the hotel in sunny SoCal, there is a USC medical school event going on. This morning, I went for a long, long run…and upon my return, as I sweatily walked by well dressed doctors and administrators, I heard one comment, “This isn’t hot like autism.”  I don’t know what he was talking about or the context of what he was talking about, but overall, I think that is a very reassuring comment.  Why?  Because it means that it is not only getting buzz and raising awareness, but in the medical research field, it probably means that dollars are coming in for the R&D.

That probably shouldn’t raise any false hope though.  Hard to create cures or medicines for something they don’t know exactly ‘what it is’, but the first step would be more research into the ‘exactly what it is’ area.  I suspect that in my lifetime, and the first half of Demetrius’ life, that’s probably where the majority of the learnings will be – this takes time….but could I have written that if it were 1996 versus 2006? Probably not, and I probably would be less comfortable with my son’s options than I am today, because such strides are being made.  But a comment like that makes me think that 2016 probably looks even better for those with autism.

 

Posted by Jerry in 17:34:07 | Permalink | Comments (1) »

Kindergarten Thoughts

Anyone that reads this on a regular basis knows that I can get a bit emotional about Demetrius on airplanes.  So we are up, the laptop is fired up and I have on my background noise reduction earphones on….so I am ready to do some writing and thinking.
This morning I made the boy pancakes and walked him out to the bus…it’s the last week of school.  Its made me reflective about the past year.  Kim and I knew that this would be first of Demetrius’ kindergartens – that he would be repeating the year no matter what.  What we didn’t know is that we would have to battle as much as we did. 
Look, I’m not the kind of guy that says that the schools are all bad and you have to approach dealing with them from an adversarial position, but at times it did become that for us, and at a minimum, some rough words were said between us and the school/school district. 
But at the end of it, I think there were three major take-aways for me:
1.    It is best that we take a cold hard look at each of his teachers.  A teacher with little professional experience is just that – one learning the ropes.  For a special needs kid mainstreamed, this probably isn’t the best scenario.  If she’s trained as a specialist or to teach at risk kids, that might be it, but if she is freshly-minted from a fine public institution, and still has tee-shirts from her sorority’s last ‘Spring Fling 05’, she’s probably not for us.  Our kid needs a teacher with some meat on her bones and has been around the block – one that can at least see a few former students in the incoming junior high class.  She has to know how to manage the class while focusing in on achieving the goals, and Demetrius’ goals.  So, she needs to basically know how to herd the cats.
2.    Clearly we don’t believe in better parenting through pharmacology, but introducing Methlyin (AD/HD medicine) into the mix has made quite a difference for Demetrius.  The issues we had early in the year basically remedied themselves through the medicine and an improved classroom situation by switching the boy’s homeroom classes (mainstream)
3.    Hiring the advocate.  Again, what a difference this made.  We were able to boil down Demetrius’ IEP from a bit of an esoteric exercise into very achievable, crystal-clear goals.  Anytime you can change seven paragraphs into one that states: ‘The boy will cycle conversationally with his teacher 6 to 7 times each day’, we all know what we are focused on.  Now, the tactics to get there need a bit more explaination, but we all know where we are going.
Some times I get a bit removed emotionally from this year. Why?  Was I expecting the worst?  I don’t think so…I think part of it was that I quickly had affirmation to a gut sense that there was going to be as much learning on our part as that of Demetrius – and when immediately went around with the school about the boy’s initial homeroom teacher, I just knew we were in for some learnings.  I also kept in the back of my mind we’d be here again, and the goal was to get through special needs this year, working on a number of things that would allow us to repeat Kindergarten mainstreamed next year. It seems to have worked out that way (in fact it has, with a few hiccups, but it did).  So we better keep our eyes on the prize and understand what we were learning along the way.  I would give us, as parents in this situation, a B to B+ grade.
So if I’m on a plane next year, what will I be writing?  Will Demetrius make such headway to be mainstreamed into first grade without a parapro?  Or with one? Will his speech be more audible?  Will his attention span be greater and will he be a more engaged conversationalist?  Well, I hope yes…but I would be happy with more than less and I could live with only one or two.  I’m sure there will be new things that I can’t foresee and a few that probably will knock me over with a feather…but I think I’ll be better able to handle what’s thrown at us (as long as it isn’t regression – that would be hard).
And then, as if we haven’t had enough Kindergarten…
Maya starts!

Posted by Jerry in 05:35:58 | Permalink | Comments Off

Advocate and People Magazine

If you are a regulary reader, you’ve seen mentions of our advocate in dealing with Demetrius’ IEP, Aimee Dinehart…plus, you know that I am a big fan of hers.  If in the ATL and needing a bit of IEP support…she’s your girl! 

Below is an email that she sent to me last (and a few others) last week about a former student to hers in Flordia.  Read on, a nice little ditty she put together…
In the most recent People magazine (dated May 29th, 2006), there is a
well-written article about peer mentoring and its benefits, to both the
disabled child and the mentor. The subject of the article, Vincent Benito,
was one of my students (back in 1998-99 and 1999-2000, before our move to Georgia) and was the first student with Autism I had ever encountered. He taught me more about not just the disability, but how to include a child with a profound disability in a regular classroom. He taught me a whole different level of compassion and patience…and how to appreciate the small things in life. Ironically, soon after my first year with Vincent, my middle son, Aidan, was diagnosed with Autism. Now, as the mother of three boys with ASD, I can better understand Nila’s fight for full inclusion and peer mentoring. (Thank you, Benitos!) It’s a good read…thought I’d share.

Posted by Jerry in 05:32:51 | Permalink | Comments Off

Sunday, May 21, 2006

Maya and the New Skechers

Sweet…..

 

Posted by Jerry in 03:24:19 | Permalink | Comments Off

Saturday, May 20, 2006

Miracle League

Today is Demetrius’ last Miracle League baseball game.  There is an awards ceremony where he’ll receive a trophy, then chips, cookies and hot dogs galore by the jungle gym.  He and Mom will have a fantastic time.  I’m with Maya today at gymnastics (they are working on their tumbling right now) and then, per my earlier posts, we’ll be going to buy the now nefarious pink Skechers.

It is hard for me not to gush about Miracle League.  Their URL is on my blogroll to the right.  There are so many things right about this experience for both my boy, and me.  If you are a Dad of a special needs kid, and you have a sports, sports and more sports background like me (and the knee and ankle surgeries to prove it), it can sometimes be very hard to find ways to bond with your child once he/she begins to move out of their toddler years.  Why?  Because its in our nature to do with them what I’m dong today with Maya, that being, get them enrolled and playing in sports, etc…(and by the way, thank the good lord for Mommies – because without them, again, per earlier posts, we might not expand these children’s experience beyond tee-ball…but also to earlier posts, we don’t want to make too much of a fuss).  But enough of the high horse – it can be hard, and as I have said before, I have an extremely hard time watching dads and sons kicking the ball around or playing catch. 

Miracle League is not a panacea – but it is a league that allows them to run around and play in a game, in a league, where they can build confidence and just plain run around to the best of their abilities.  They are teamed up with a buddy if need be, these are just regular kids doing a good thing by being patient and helping them out during the game, whether that be helping them swing the bat, run the bases, or chase a ball down in the outfield. Demetrius has grown attached to an older boy named Michael – they actually look for each other before the games. Very sweet.

But what I never realized until I talked to the founder, was that this league ended up being something that he didn’t set out to create…see, he thought he was creating a league for kids to play games…he never thought he was creating a social eco-sphere for the parents.

How hard is it to be a parent of a special needs child (SN)?  I think very hard, but I’m not sure how much so because our first kid is SN and it has always kind of been that way in our house.  Ask a parent of a SN where he/she is a third or fourth and they’ll probably have a better gauge on how it affects the average/normal family.  When you get your formal diagnosis – as stated before – you feel very alone, confused and even though there are paths have been walked before and people to talk to..it is all very personal.  The therapies, the nights crying, the nights not sleeping, the constant wear and tear of worrying…and you go to the park and your kids don’t play with other kids, or in other places…and you begin to become somewhat stoic and put up barriers.  Barriers, I think, that helps you as an adult deal with your child and try to block the heartbreak so to speak, but none-the-less, you can easily begin to sequester yourself and your family from parts of the real world.  It is minimal grade slide down into hole, but it is a slide none-the-less.

You can outreach to others during therapies, etc..but if you are there to observe progress or talk to a therapist about next steps…you really don’t have time to socialize, not too mention many of the moms run errands while their kids are in therapies because it is, simply, down time for them to get some peace-of-mind while buying groceries without a high maintenance SN hanging on them or throwing a fit.

But this league, what it does is put the child in a more normal environment for the parents, on a sunny morning, where everyone pretty much is smiling, running around and enjoying themselves.  If even for just an hour, I think those barriers are down for most of us there.  You begin to talk…just like at last Friday night’s get together I was talking about.. and you begin to root for the kids like at a regular tee-ball game, and, low-and-behold, you go out for pizza with other parents, or get together for coffee, or have their family over…again, creating an environment for normalcy.

The founder, John, talks about how he has seen parents, over the years, not only become great friends, but gain confidence in themselves about their children. This comes from this, lack of a better term, nurturing environment where the older parents hold these get-togethers and social events for other ‘newer’ parents…and along with his league, we’ve seen groups form and begin to reach out to more parents. Sure, the League benefits from more children and more dollars to fund its existence (it is now expanding into bowling and swimming) but it also benefits from parents who are advocates and enthusiasts…and believe it or not, when they move away they work to create such a league in their new home-towns (I know one has just started that is based of our League in the Dallas/Fort Worth marketplace). 

For Kim and me, well, we are maybe not social butterflies, but we are type-As that really don’t have a hard time talking about this or crawling into a hole. But we know parents that aren’t wired this way, and this League, over my year plus involvement in it, have begun to see their kids and their lives in a very different way (and this usually takes place in the younger divisions where it is all so new to us).

But for me, well, what is making me well  up right now and gush on about this League?  It is very simple: Jonathan, the world’s greatest buddy, has taught Demetrius to throw the ball overhanded.  Enough said.

Posted by Jerry in 20:41:26 | Permalink | Comments (1) »

Friday, May 19, 2006

Pink Skechers

Maya and Mommy go for walks most mornings with Buddy, flowers are picked and birds are noticed for their pretty colors.  Who knows how Buddy sees these walks, but I don’t think those are the things he notices – “Wow, that Cardinal is pretty Maya, but can’t you smell that %$#) two yards away?…can’t wait to get there!”  However, the Holy Grail of these adventures for Maya is the bunny rabbits.  Every morning she aches to see one, and periodically they go early enough that the rabbits are out and still foraging in our yards.  She, of course, wants to catch one (as does Buddy, but I think for different reasons). 

Wednesday, I got a call while the two blonde bombshells were out on the walk, Maya tells me she almost caught the bunny (I doubt it, but not how she sees it…Maya really isn’t the type of kid that can sneak up on you) and she would have IF SHE HAD A NEW PAIR OF PINK SKECHERS.

What? Already? I wasn’t expecting that until at least she doubles her age – of course, Kim starts laughing.  Was that statement planted by Mommy? No way, Mommy is laughing too hard.  My guess is that some wee-one in pre-school has a pair of pink Skechers, and we decided they were cool and we now want a pair. Good thing is she is actually due for a new pair of sneakers. So it will all work out.

Now, of course, being completely whooped – I have found five places that sell kids skechers within ten miles of the house, so Saturday, I have no doubt we’ll be looking at these shoes. I’ll post a picture this weekend – but if I were a betting man, I  think we’ll get something like these:

Posted by Jerry in 14:29:16 | Permalink | Comments (2)