Friday, April 28, 2006

Daddy Mistakes

I think my blog has recently been less musings and more moping. So here goes. Some daddy mistakes.  I don’t recommend you do these with your kids to see if they entail the same results.

Office Hide-and-Seek.  I don’t recommend you play hide-and-seek with your son in your office.  Especially if it is filled with endless cubes.  Not wise. Especially if he is autistic and has the attention span of a teste-fly.

Do not explain what the breakers in the box do. Do not show the children how these ‘shut off’ the power in parts of the house.

Periodically your children come to visit you while you shower. Maya stated that Daddy’s weenie was bigger than Demetrius’. Daddy agreed. He mentioned it was the biggest in the world. Daddy thought he was pretty funny.  It wasn’t funny when Maya mentioned it to the woman ringing up our order at Jason’s Deli.

Don’t envoke the 3 second rule on dropped food.  It will be used at McDonalds, and one has no idea how long that French fry has been on the floor.

Do not curse out other drivers for their lack of road navigation skills. It doesn’t look good on you when your daughter screams at people to ‘move their ass’ while waiting in line…like Daddy does in the car.

Mommy’s cooking is always exceptional and wonderful.  So when she serves something that the kids don’t recognize, they don’t ask her if it ‘sandpaper’ or ‘cardboard’.

Nonni and Nanny Joan live in Texas and Kansas, not ‘Make Believe Land’.

You should always help your kids give the dog a bath.  Outside.

Posted by Jerry in 17:53:55 | Permalink | Comments (1) »

Thursday, April 27, 2006

Tummies and Babies

Demetrius has all of sudden become a bit fascinated with the body. Mostly, we think, because we have a friend that is about to have a baby….and since it is pretty much fully baked and she waddles around, he’s taken notice of how she’s changed.

Of coure, Mommy explained that her tummy is so big because there is a baby in there.  Demetrius got it…and the next day, of course, asked Maya if she had a weenie.  We were somewhat proud – he was taking notice of other people…a big thing for autistic kids, especially the mild ones, it means they are becoming aware.

I was NOT happy when he asked me if I had a baby in my tummy, and kept touching it.  I kind of thought that I had been losing weight and was looking much more trim and svelte..but Demetrius doesn’t lie, and told me I had much more weight to lose…I’m not Johnny Depp yet.

He asked me again last night.

I just can’t wait until we are at Chic-fil-A and he asks the fat woman about the baby in her stomach.  That will be lovely……

Posted by Jerry in 19:56:05 | Permalink | Comments Off

Crying

You know, I don’t personally know all the folks that are reading this blog (some of you, yes – I do know who you are!) but a few are very crafty! I am just fascinated (the innocent will remain nameless) by the gentleman who figured out my work email address by reading the blog and doing a Google search.  Well, it wouldn’t be that hard, I guess, but still impressive to email me without posting on the blog.

First, let me say this – the blog is what it is, therapy to an extent for me.  Not everyone is comfortable with putting their emotions/feelings on their sleeve and posting online for all to see. That’s why you have the ability to post anonymously.  I would prefer, however, that you do just that – others feel your pain, as former President Clinton would say, and I think they can benefit a lot from you asking your questions publicly…you might just find that someone else feels that way, and then they post – and we get some answers.  Which, I think, we are all looking for….

To the question that I was posed in email –

For all the time I have known about Demetrius’ condition: do I still cry, three years after finding out?

Hell yes.

I cry for him. I cry for my wife. I cry for me. And I cry for Maya.  Sometimes just because this is very, very hard.  Sometimes, and there are less of these the more we work with him to come out of his shell, when he is non-responsive – it just makes me numb and too emotionally drained to cry.  Other times, watching him try hard to write something that his sister just can pick up a crayon and write easily – yes, heartbreaking.  But I don’t tend to well up just at that moment. For some reason, it kind of builds and then all of a sudden – a few tears.

I tend to cry when I am alone, or think I’m alone.  Maybe on a ride to/from work, or on an airplane (by no means are you alone sitting next to a car on the highway, or a person in seat 12B, but hell, the truth that you are surrounded by four windows doesn’t keep anyone from picking their nose in their car).  I think I know why on the airplane – after we got his formal diagnosis, I had to get on a plane and fly to NYC for work.  I think deep in the back of my brain, this triggers these types of feelings and then the tears.  I will always remember how very alone I felt, very confused, I felt cold, and in a new place in my life. Because of this, I was somehow different than the guy to my left or the lady to my right.  Further, my life was now on a different course…I mean, we knew there was something wrong with Demetrius, and we were pretty sure he was autistic (Kim knew long before I accepted it), but now it was confirmed – and this was going to be with us for the rest of our lives.

Emotionally, I still get conflicted – I won’t lie. The tears are less often then they used to be – we have lemons, so make lemonade I think is an appropriate saying here – but every first hurts, because it is new pain. It doesn’t get dull.  Like the official diagnosis I mentioned last week in the IEP posting.  This is my child, how can this ever feel dull or less painful? It doesn’t, you just kind of, I think, get a little better at readying your body to take the hit.

I could meander on and on about this – but yes, I cry. And you should too.  I am not a crier by nature – I’ve never understood tears at funerals for those that have lived a good life, everyone will die, and if he/she lived a fruitful one – shouldn’t you actually be smiling because he/she was so lucky?  But I’ve learned through Demetrius that it okay. Because when you feel very low, and that this just isn’t going to any better, Demetrius seems to do something to remind you that it is getting better for him. 

And that’s worth crying about too.

Posted by Jerry in 14:08:35 | Permalink | Comments (1) »

Wednesday, April 26, 2006

Ch-ch-Changes….

Seems like just when things are set for one area of the boy’s life, another has a hiccup. Should be that way for adults, not kids. But when a kid’s life is as scheduled as his is, I guess it should be expected.

Demetrius is having some issues in his occupational therapy. Not surprising to me, I think what I have observed in the past few months is his moving away from what they offer at this particular office – the payoff for being a good boy just doesn’t work anymore – he’s way beyond a reward of stickers and jumping in the ball pit.

So here is my point, sometimes these things are emotional, and sometimes you just have to be clinical about it. What can they offer to him to get him to behave – that’s not just a special needs issue, is it? We’d have that same conversation about any 6-year-old boy (see Anonymous’ postings over the past two weeks). Is his therapist right for him? Some kids do better with older teachers (Demetrius does) and others react more favorably to a younger more energetic teacher.

In this case, we are really evaluating these issues clinically. Is he ready to move on? Would a change be better for him with different goals/objectives and need fulfillment? Are the obstacles the right ones any more? While he might need work on fine motor skills, the gross motor just aren’t a concern, etc., etc.

This is the first time I think we’ve said that with his autism, that it isn’t necessarily an emotional reaction. Hopefully, this is a maturation process for us as special needs parents, along with changes in his development. Sometimes different things just don’t work – find what does and go with it, as long as you are still achieving your goals.

Feedback/thoughts? Love to hear from the readers on this one….

Posted by Jerry in 14:45:15 | Permalink | Comments (1) »

Monday, April 24, 2006

Siblings

Demetrius has a number of therapies throughout the course of the week. Some at home, some at Children’s Healthcare of Atlanta’s satellite office in Roswell. The one at home involves another little boy that we are family friends with, so often Maya has a friend to play with in the confines of the subdivision during the session.

I’ve been asked about the sibling issue before, and I know this is something that Kim worries about a lot. I’ve briefly mentioned it before, but we do worry about all that we do for him – and how it affects her.

In regards to her being bored out of her gourd at these sessions, Kim does a great job of turning them into ‘Mommy/Maya’ get aways. This way it is something like a little treat that the two of them get together to share. They might go over to Whole Foods and pick out something to cook for dinner, or go to Dunkin’ Donuts and share a muffin. As I said before, it is nicer now, so she gets to run around the park and have Mommy paying attention to her as she plays and frolics (versus chase after Demetrius – yes, he’s a runner, and once he’s off, he ain’t coming back!).

You also have to be somewhat inventive – like Mommy, Maya’s an artist, so I know Kim has special colors and pads for Maya when the weather’s uncooperative to be able to ‘do crafts’ during D’s sessions. These colors and supplies are only broken out on those days – therefore the allure is awesome.

Finally, sometimes, we are able to secure her favorite babysitter, so she can stay home and play with her, and can blow off D’s therapies altogether.

I think it is also important to be cognizant that she is the little sister in this particular dynamic and all these therapies are just part of her landscape. This is what she knows, and what she does. She isn’t old enough to rebel or throw a screaming fit, “I’m not going, dammit!” And we never want it to get to that point, which is why Kim’s so proactive with making her experience a good one.

I feel sorry for the older sibling that would have to be carted around to these on a periodic, if not more scheduled, basis and wasn’t used to it. Most likely there would be some resentment and push back, if not acting out, in interesting and irritating ways.

While I’m not sure this book is still on our shelves (many have come and gone) it is a good one to review just to think through the other people in the family when you are focusing so much time and energy on the special needs child.

Siblings of Children With Autism: A Guide for Families (Topics in Autism)

From Library Journal

This first title in a new series meets the needs of parents who inevitably ask how autism affects the entire family. Given that brothers and sisters react differently to siblings with autism, depending on many factors such as birth order and age, this book will help the parents explain autism to them. It will also help siblings share their thoughts and feelings about how their family is different and their role concerning the autistic child. Much practical advice on how children can share time together is also offered. With clear and simple presentation directed at the average lay reader, Harris (dean, psychology, Rutgers Univ.; executive director, Douglas Developmental Center) has done an excellent job of offering guidance to the whole family of the autistic child. Recommended for public libraries.
Marguerite Mroz, Baltimore Cty. P.L.

Here’s a hyperlink if you want to order it:

http://www.amazon.com/gp/product/0933149719/103-8081369-1696620?v=glance&n=283155

Posted by Jerry in 14:59:33 | Permalink | Comments Off

Friday, April 21, 2006

Good Morning America/Surfers Healing

Posted by Jerry in 15:54:10 | Permalink | Comments (2)

Thursday, April 20, 2006

IEP Meeting

We had our IEP meeting with the school yesterday.  I would say the whole thing went as well as can be expected.  We got pretty much what we wanted (we cut down on the hours that Demetrius will have an assistant in the classroom at the beginning of next year), but to make sure all goes according to plan, we are going to have a parent/teacher/IST meeting about a month after the school year starts.  This should get us past the honeymoon phase and see if the boy is making progress.

He is repeating Kindergarten next year, the goal is quite simple – but of course has a million moving parts to achieve it, right?  To become a better student in terms of managing his transitions and following directions, so he can move onto a regular 1st grade class without the assistant, and without any sort of special needs support.  Achievable…well, we have our hopes.  But I think you have to aim high and realistically and both of us think that’s the case.

On a personal note, of course, I’m wiped out from this meeting.  Alot of stress.  These are very, very hard because they are the starkest reality of the situation with your child.  There is no emotion outside of the parents – it feels, and is, very clinical.  He is autistic. He is not normal.  He does not act normal. Accomodations have to be made to have him interlope and interact with normal kids.  He also got his official evaluation back from the Fulton County School district, which we went over the psychological and IQ tests, which qualifies him as autistic. Good to have because there will be less of a fight by folks to get what he needs for him, but again…there it is, staring at you in black and white.  What he can do and can’t do, and where he ranks up against all the other little boys and girls his age in the school district.  It is a very hard read, and a very hard discussion to have.

So you are nervy, angry, sad, in a fog, and all the other things while trying to pull it altogether and plan out the following year at school.  I find that I might be talking about a resource room need for him with all these educators and adiminstators in the room…and I wander back to the psychological evaluation and a statement that says something to the effect of, ‘Today, he ranks in the 19% in intelligence for children his age’.  19th!  Thank God we can only go up from here!   Thank God that with all of his help his educational experience is accelerating and on the kindergarten level he is only slightly below average…but those social skills scores are so very low and what’s possibly below 19%? Do I even want to speculate on that… Oh, I’m sorry Ms. XXXX, yes, 1.5 hours in a resource room for speech therapy is great….

I’ve said this before, ugh.

Not too mention you become all 1984-ish around these meetings and turn on the ones you love. Yes, Kim and I fought like dogs wanting the last slice of bacon before and after the meeting. And we’ll do it again, and again.  Where else can you blow steam? And this kind of steam?  Its kind of cone-like in a way – there just aren’t alot of other people in the cone with you (remember Get Smart?  This is what I’m referencing here) and those that are have their own stuff with their own kids to deal with in re: to special needs.  So you blow up at each other. They say that divorce rate among the parents of autistic kids is very high.  I don’t really know if that’s a ‘good to know’ or not – but I do know that I’m very thankful that my marriage is strong.  It will take a couple of days to recalibrate – but we will.  Until then, the less said, the better.

I got up and went for a very fast 12-minute-mile run this morning (did about three of um). I don’t think the dog even panted, but I felt like I was flying.  Alot to work out of my head before I come into the office.

All in all I’ll swing from this theraputic posting in a day or two to a good mood, because I will begin to see all the good things that happened: I know what they are now, I just haven’t gotten over the emotional part.  In terms of academics, he’s gaining confidence and speed and is only just below average – and he is such a hard worker so that maybe he can hit all of those goals. And, on top of it, his teacher says he gets on very well with the girls…and with those big brown eyes – well, maybe one or two will like peer-buddying with the weird kid in class….I’m sure I’ll have more to post about shortly.

Now, back to work…

 

Posted by Jerry in 13:19:42 | Permalink | Comments (2)

Wednesday, April 19, 2006

CDC Response To USA Today Ad

Lots going on in regards to the mercury issue/thimerosal and the CDC has issued their statement on the ad from last week.
Professionally speaking, I don't know if it is ever a good idea to respond to an ad, it seems a bit defensive to me, but we can discuss more.
 CDC Statement regarding autism-related advertisement in USA Today (April 6, 2006)

We know that autism is a heart-wrenching situation for many families and
many children and it presents special challenges that we would certainly
want to prevent and do anything we could to avoid.  When it comes to the
nation's immunization recommendations, the CDC and Public Health Service
are always guided by one overriding goal and interest-all our
recommendations are designed to protect the health and well being of all
children.

We are very disappointed in an advertisement that appears in today's
edition of USA Today.  The advertisement completely mischaracterizes the
efforts of CDC, the American Academy of Pediatrics, the Institute of
Medicine, and others to protect the health and well being of the
nation's children.  CDC has sponsored multiple public meetings and
scientific reviews, we've involved numerous outside organizations and
experts in our research and recommendations, and we've made continued
investments in research designed to discover factors which may place
children at risk for developing autism. Importantly, if levels of
thimerosal found in vaccines, including influenza vaccines, were
associated with harm, CDC, the Public Health Service, and the nation's
physicians (e.g., the American Academy of Pediatrics, the American
Medical Association, and American Academy of Family Physicians) would
not recommend their use.

We've made substantial progress in removing thimerosal from vaccines -
and have done so without placing infants and children at risk for
potentially serious vaccine preventable diseases.  As we continue in our
efforts to further reduce the use of thimerosal in vaccines, we must
also ensure, particularly in the case of influenza, that our efforts do
not create serious undesirable outcomes, such as vaccine shortages that
would place people, including children, at risk. History has shown that
disruptions in vaccine supplies can render the population more
vulnerable to diseases we know we can prevent.

We don't know, unfortunately, for children with autism what caused it,
nor do we have sound, scientifically valid information on effective
treatments. That's a fact. We just simply don't have answers to the
cause of this disorder or the disorders that fall into the autism
spectrum. We don't have a complete picture of the scope of the problem.
We're just learning about the subtleties that can be early signs of
autism, we're learning about the importance of early detection, and
we're learning about the importance of early treatment, but we have a
long way to go before we really understand the scope and magnitude of
this problem in our country and what the trends really mean.

As we're looking for answers related to the causes and effective
treatments for autism, we have to also be careful not to base our health
recommendations on unproven hypotheses or fear. We have to base our
decisions on the best available science that we have in front of us, and
today the best available science indicates to us that vaccines save
lives, and that's a very, very important message for all of us to
remember.

For more information about autism, immunizations, or thimerosal, we
encourage you to visit the CDC website:  http://www.cdc.gov
Posted by Jerry in 17:03:52 | Permalink | Comments Off

IEPs and Advocates

Tomorrow we meet at Demetrius’ school to discuss his IEP (Individual Education Program) for the upcoming school year. I will blog on that more throughout the next few days.

Today though…if you are reading this blog, there is no doubt you know some variation of this statement, “the sooner you can get your child diagnosed and into therapies for autism, the higher the chances that it can significantly impact his/her early education development.”

I kind of feel that way re: IEPs, but for the parents rather than the kid, the sooner you get your child into school programs that require the development and writing of an IEP, the better equipped you’ll be in the near-term to begin to navigate the difficult directions on the map of education for your child.

I would be remiss if I didn’t tell you that we made a number of mistakes, missteps (if not mistakes) along the way in developing our child’s goal/tactics for his first year of kindergarten within his IEP. I would also be remiss if you read this and think that I’m some sort of expert in this area – that would be my wife, Kim…she knows more about autism and approaching the educational arena in two hairs on her head than I know in my whole body. And we made mistakes. Kim would tell you that we got caught looking at the trees (worrying about how things are written in the IEP more than if they are helpful in achieving the overall goals) versus seeing the proverbial forest.

But here’s what I’ve learned through the first ¾ of Demetrius’ kindergarten year in re: to his IEP…

What I think we did do right was:
• Adapt – we saw what we liked and didn’t in terms of his environment and learning style, and we addressed these issues with the school almost immediately, days after the first of the school year
• Engage – you’ve got to speak up – an IEP isn’t the Ten Commandments, this roadmap can be adjusted, and you should sit down to discuss, evaluate, and argue if need be – with all his/her teachers, assistants and caregivers to get feedback and changes made…no matter what your personal style is – no wilting violets or passive aggressive behavior here – folks, this is your child! Speak up and discuss!
• Ask – all of you know the other moms and dads in your kids classes, get over yourself and good manners (like ‘mind your own business’) and ask the questions about their child and his/her IEP. Trade the IEPs like baseball cards. What are they writing in their IEPs and why? Find out why they worded something a particular way, or wrote it in a certain fashion. I don’t think I’m getting off the reservation when I say that some of the best things in Demetrius’ IEP we got from asking questions about what Kim saw in another’s IEP (again, she’s point on this in our family…), engaging that parent in a discussion about what they did and why and adapting our IEP where it makes sense
• Advocate! – Finally, and if you can afford to do this – hire an advocate

Over the course of time in this blog, you will find out that I’m in the cheap hall-of-fame. I am extremely frugal (I buy clothes off of eBay – wash ‘em first before I wear them), but I can tell you that the best money I have spent on anything over the past few months was hiring an advocate (Ms. Amy Dinehart for those of you here in Atlanta – we recommend her) to help us rewrite Demetrius’ IEP and deal with the teachers, administrators and special needs counselors appropriately on the controversial areas and subjects…and just to evaluate the document from the floor to the roof.

In regards to our advocate: first – and this is important – she’s a teacher herself. Second – she has special needs in her family. She more than understands what we are up against and what we are concerned about as parents…and she understands the concerns, policies and situations that the school needs to contend with in dealing with us and our requests for aid/changes.

In writing, she was able to help us translate our wants (and demands) for Demetrius from ‘Parent Speak’ into ‘Teacher Speak’. She was able to better help us define the tactics that would help Demetrius achieve the goals we set for him. And finally, she is able to be a somewhat dispassionate third party at the table when we sit to discuss and argue about Demetrius’ IEP and help both sides communicate with each other.

There is no secret sauce here folks – she’s a liaison that helps two sides reach an agreeable solution, if not, consensus. I will say without reservation that her skills and counsel has helped Demetrius begin to make considerable progress in the second half of this school year (there are many factors, but I do call this one out as obvious in my mind).

And as always, you get what you pay for. Nope – an advocate won’t be covered by any sort of health plan or Medicaid program. So I would say that you stop buying the Starbucks and going out to lunch…put away your tax return, or trade in that digital cable for basic service….do whatever you can to save the money to hire yourself a good advocate to help write and argue your child’s IEP. Best money I’ve spent in 2006…and it is only mid-April, and I’ve spent a lot of money this year!

And like an early diagnosis and therapy (which I started this rant with) – if you get an advocate early on, then you can have a great IEP in place to help your child achieve all he or she can for that particular year in school or early in his/her or educational journey.

The final point for this entry is about how do you find an advocate? I would start by contacting your special needs pediatrician to find out if they know one or can point you in a direction; work your network – there is probably a parent that knows of, or has hired one in the past – you just got to ask; hit up the therapists, and finally, ask your special needs educators and administrators. They’ve probably dealt with a few in the past.

Posted by Jerry in 02:27:37 | Permalink | Comments Off

Tuesday, April 18, 2006

Callipittars

Did everyone have a good Easter, Passover…or just plain relaxing Sunday?  Hope so.  We had a good one here at our house.

As I said yesterday, we are having a great Spring…. a little warm, but the humidity hasn’t set in yet, so I could spend all day outside…. soon it will be too hot, too buggy, too humid…it will be late Spring in the Southeast.  But right now – gorgeous like they say dramatically in New Jersey.

Yesterday in the yard Maya called me over to look at a callipittar.  “No Maya, it is a CAT-A-PILL-ER”.  “Callipittar.”  “CAT-A-PILL-ER…. you can say it.”

She looks at me, smiles and says, “Daddy, this Callipittar will turn into a pink butterfly.”

For once, I stopped, looked – and said, “Maya, this Callipittar will turn into a beautiful pink butterfly.” 

Sometimes – you just gotta look at the callipitars, before they turn into caterpillars.

Yes, a very special moment with my daughter. 

Of course, later she hit another kid over the head with a croquet mallet.

But that’s a story for another day.

Posted by Jerry in 02:04:11 | Permalink | Comments Off