My Autistic Boy And Other Adventures In Fatherhood

Every parent wishes a report card says more. For me, in my memory of them, they are mostly markers of ‘oh shit, game over.’ As a kid I never took school too seriously, and report card day was almost always a time of reckoning (if my actual grades were great, then my conduct scores weren’t good). In fact, usually, I was nailed on one or the other…I couldn’t bring them both together to ensure I didn’t have to have a talk with ‘Grandpa’ (at that time, Dad) on the couch.

But at most, they give you a limited amount of insight, right? The rest should be in a parent-teacher conference. Does an A in science mean that your child is doing his or her best, but is at their apex of skill/talent/smarts right now…or do they truly have a competency in this area that they could excel in…or possibly turn into an actual well paying career choice? What does that A in science really mean…AND….is the person giving the grade competent to make such analysis or recommendations? I had a science teacher once in high school that actually was the varsity baseball coach, the year before he taught American History. He knew about hitting singles, but less about basic life sciences…nor, I think, did he care at all about the latter.

But with Demetrius’, which he just got, I just don’t know how to initially react to what I read. I mean, he got all satisfactories (satisfactory, needs improvement, not yet taught are the only markers for first graders in this school system) minus money counting and some handwriting/spacing (and what average boy is good at that anyway?). But is that satisfactory, ie, to IEP plan, or satisfactory compared to other students…what? I mean, it is a carbon form that has a check box next to a box….what do I read into this?

Thank goodness we have an IEP meeting coming up soon (Aimee, have you spoken with Kim about this?). This will tell us something, for sure. And don’t get me wrong, I’m thrilled to see all of those check marks in the satisfactory column, but I know there is more to judging this kid than meets the eye with this particular (or any) report card….

That said, his scores in behavior were all satisfactory. Long and short of it…on average, that’s alot better than his pop ever scored report card period to the next report card period….

I don’t have to read into anything there - he’s a sweet, hard working boy…and I’m certainly proud of those checked boxes!

I’m in Baltimore today, and I consider myself lucky.  This bad winter weather is moving across the East Coast, but in Atlanta it is just rain….and its rain here in Maryland.  That said, about 50 miles north, its ice.  So my flight heading south is on time (coming from Florida, so not delayed either)…but just about every other flight at these gates is either canceled or seriously delayed.  We’ll see if this holds up (so far it has, I’m on the plane and we’ll see if this plane can get up and going!).

I had to miss Demetrius’ first IEP meeting of the school year for this trip.  I hate when work stuff gets in the way of these.  When I got Kim on the horn about 5pm, I forgot to ask how everyone is doing…I assume fine, lets get to brass tacks woman!  How did the IEP go.

Well, they never go ‘great’…but Kim said today’s went good.  All in all Demetrius is proceeding within expectations. Which means he’s not on level with his first grade peers, but he’s achieving his goals in his IEP.  We want more, but within expectation – well, that’s something.  We’re getting there.  Hopefully, by the end of the year, he’ll achieve all of his IEP goals and be close as he can possibly be to being on grade.  Kim said that she feels the school, administrators, therapists and teachers are doing all they can for him…so as far as a cell-to-cell phone call clarity can provide, she’s comfortable with the meeting.  Again, he’s within expectation, but not exceeding on any of his goals and he still needs constant supervision – he can’t complete tasks on his own.  This is always worrisome to me…worrisome for the distant future (I like to worry about long term things, like when he’s 25, or how much money I’ll have at this saving rate by the time I’m 50, 60, 70 yrs old, etc…).  But Kim’s reaction, while I could hear the wear-and-tear the meeting caused her in her voice, felt relatively good…and positive all is going well and the best that can be done, is being done.  It’s all we can ask.

Funny how far we’ve come.  Two years ago these meetings killed us, today – we just want to be on schedule/plan and know the boy is moving forward…and what we can do.  In a weird way, not being fired up feels like I’m cheating the boy somehow, but I know better…I know the change in reaction is just that, a change in reaction – but a reflection on how much we care or involve ourselves in his education…but still….we have to adjust from the previous Pavlovian dog training.

Anyone else running through these feelings?  Any words of advice?

We had a full one in Alpharetta. Maya’s friend Morgan had a birthday party at Build-A-Bear Workshop at the mall.

Look at all these little ones, and their bears. Maya is in the middle (third from the right) with her brown bear: first name, ‘Maya’, middle name: ‘Chocolate Brownie’, nice!

Demetrius had it rougher, he’s no fan of the mall and all the white noise and people (though he could hang out in the toy store and Disney store endlessly…interesting….). We forgot his tight/stretchy Under Armour shirt, so he also didn’t have his sensory input. I shouldn’t say we, I forgot. My bad.

We also swam alot this weekend…even in Suburban Atlanta we can feel the temperature starting to cool down in the morning, so we know our days at the pool are now numbered.

On another note…another school year, another issue. Now, this is not in itself a big deal, but the way it was handled, and communicated, is a bit concerning. Last week, on a Thursday, Kim saw Demetrius’ aide out and about, during school hours. Hmmmm - Kim approached her, she’s no longer D’s aide. In fact, she’s no longer an employee of the school district. Huh? We find out Demetrius has another aide, from his IRR teacher, and that the school has yet to communicate this to us - in over a week. Huh x 2! Okay, clerical/communication error. Apparently, we have to be notified via letter. Okay, we see the assistant principal at curriculum night/open house, she mentions she is going to send that to us immediately. Friday, it comes home in D’s backpack. Two sentences. That’s it. Two sentences telling us that a ‘personnel change’ has been made.

Lets review. Everyone sits through hours of IEP meetings. The school and district hire/find an aide to help this child. Aide is trained on autism and learns to work with this little boy, who, to remind everyone - has a large number of personal ‘ticks’ and doesn’t handle change very well - and she begins to adapt to his peculilarities. That’s alot of work they (school/district) put into this process and alot of structure/support we pin on this team to help educate this boy. Everyone has vested, alot. Then, for very adult reasons (people come and go, and are hired and fired, can’t fault anyone here for that) a change has to be made. That’s life in the real world.

But the parents of the impacted child are communicated with in the briefest way and form possible. Two sentences. Talk about feeling very much in the dark. It is hard not to feel that the ball has been dropped when you are left scratching your head and shoulder shrugging because you have the briefest form of communication possible.

Look, I am not interested in the whos or whys. People are people. But in terms of this child, a little tweak here or there can have a huge impact. It sure could on regular kids….but autistic ones especially. A call, an explanation, a request for Kim & I to come up and meet the new aide - all or any of this could have made all the difference. Still could in my mind. So, of course, Kim is Kim and is picking up the ball and running with it to schedule a meeting with the new aide, etc…why wait? Take action. We’ve been doing it since he’s been three, we aren’t gonna sit around and wait.

I’m quite aware that dealing with the Grassos is pretty much a pain in the ass. I get that. But it is because Demetrius is autistic. Thus, everyone has to work a little harder, and try to communicate a little better, understand the fragility of the situation of educating this boy. This is on both sides, we work hard to support the school with what they are doing when the boy’s at home, and vice versa. This letter doesn’t make us feel that everyone is vested in the ways wev’ve all worked out it should be. They have a lot of kids to worry about at that school. I respect that! But I hope all of our kids are worth more than two senteneces - collectively and individually.

This could have been handled better. We’ll work through it. But I wish we didn’t have to in this way, shape or form. I hear the aide and Demetrius get on very well. That’s a good thing. The only good thing I can find in this situation so far….and of course, in the end, the only one that really matters.

I wanted to take a few days before I wrote about the IEP. I think I’ve learned that writing too soon about these meetings…I’m a bit too emotional and so I write what I’m feeling at that moment, more so than what I think through that comes out a couple of days later.

This allowed the emotions to sequence appropriately:
• Initial disappointment/anger about the meeting
• Discussion about how Kim and I are beginning to see things after a night’s sleep
• Discussion about what we aren’t agreeing on post meeting
• Fight due to stress and worry, but ignited from something trivial – in this case, her grandmother’s pillow cases in a linen closet
• Numbness
• Back to work on Monday, a deep breath and onto another day

To recap: we didn’t finalize the IEP in the initial meeting in April, and reconvened a month later after the school district’s autism specialist had a chance to evaluate the boy and we could further discuss the mathematics portion of his education curriculum for next year.

The big takeaway, or new news, in regards to the specialist evaluation was the emphasis on how stressful lunch is for Demetrius. She noticed that he started fidgeting and losing his attention to tasks as lunch approached. Lunch is then just a hard time for him with his sensory overload and then he has to decompress afterwards. Part of this isn’t new info – but I didn’t realize that he had stress about it, even though he loves eating with all the kids.

What to do?

The initial remedy is that we’ll go the headphone route…. but not in terms of noise reduction, rather, we’ll get him an iPod so he can listen to some music. This is also forbidden fruit for the other kids, so I’ll purchase a splitter (gadget that allows two sets of headphones plug into the same jack in the iPod for the music) and another set of headphones so a ‘friend’ can listen with him at lunch. We think this will enable him to stay within his own world during this stressful time, but also allow another child or two to join with him. Then we’ll monitor to see if his pre-and-post lunch stress dissipates.

I did comment that I, of course, would have to purchase two iPods. I got confused looks by some of the educators…why would that happen?

I can’t buy one for him and not Maya. She’ll end up requisitioning it, or breaking it. We’ll also have to explain that he can bring his to school and she can’t bring her’s…but we’ll tackle that when it happens.

We also agreed that the autism specialist would train both his teacher and his aide before school starts next fall. This is big for us. I’m glad to see that this happened.

In terms of math…well, the school district is going to a new curriculum, and there is a concern whether the way it goes is appropriate for him…he’s a bit behind now, and if he’s in the mainstream class and falls back…and even if we react immediately, then he falls further back. So this means he’s got to learn what he didn’t get in resource room and also work on the skills that keep him on course with the other kids. This is a big concern – which he falls further behind in math skills.

One of the instructors, she has a special needs child. She spoke from her experience as a parent and from having set up IEPs for so many children over the course of a number of years…that not only would he fall behind, but he’s a little person, and he’ll feel frustration and more stress, which only factors into making his education a bit harder for him that it has to be…in the end this swayed us; we put him in IRR for math too.

So the majority of his time, just under 70%, is in IRR. This is one of Kim’s absolute worst fears for Super D: that he is that kid that spends his days in IRR…and as all of you that worry about these things too know – the fear of once in IRR, always in IRR…even though they say they want to do everything they can to move him/her back into mainstream. But they don’t have the social/group skills they mainstreamers have…. thus, they fail in social dynamics. This is the autism/school rub – autism is primary a social/communication disorder and educators are focused on academic success. There is spillage… which can lead to ADHD, processing issues, etc…affect/effect schooling…and thus the falling back and IRR issues. Vicious cycle. I will say this is a well-grounded fear, but I think the instructor made her points very well. All I can say is, “well, we’ll see.”

There you have it.

Now, what are we looking for next?

For me, it’s a bit of Jerry McGuire: “Show me the money.” We have taken their recommendations and have agreed to them. Show me that he is making progress in the smaller, more focused IRR environment. If he is, then, well, okay. We’ll consider options from what the other side of this looks like. Let me just say – we are getting excellent results in his language arts since we moved him into that environment about a month ago. So lets see where we go with it next year. Okay, show me that this works.

I have spoken with a number of people I trust deeply, that care about the boy, and us. The analysis is pretty much unanimous from them – and it is sometimes hard for Kim and me to see since we are thick in the morass: school is about education, and since he is high on the spectrum, and he has potential, then he can be more than the token special needs ‘class pet’ for some first grade class…he can be…something in life (path to be followed is yet to revealed, so to speak) and we should at least take the educators recommendations and try this program out and see if it does deliver the results. The point is, we should listen to a lot of experts. One of these folks said to me, “You seem to take what your special needs pediatrician and many of these therapists say seriously, because you pay them directly. You buy in. Maybe you should give these folks, who are as educated as your doctors and therapists – a chance.” I was a bit taken aback from that statement. Truthfully, we are defensive when it comes to the school folk…there’s something hard I need to consider in those wise words.

The second point was that if educators are worried about his education, then it is incumbent on Kim and I to make sure he gets socialization in other ways. Swim practice, baseball, etc…this is true too.

There’s more, and I could go on longer – but you get the drift…am I coming around? That might be too strong at this point…but am I letting my guard down in terms of what will happen next year? Hmmmm…lets just say I should maybe be a bit more open minded, and of course, very exacting – when evaluating how he does in school in first grade.

This is where I stand today, four days later.

Any one want to chime in with thoughts?

Written by: Aimee Rodriguez-Dinehart Comment text: Jerry,

As always, I’m honored to be able to serve as an advocate. Much of what you state in the blog, as you share your personal experiences as daddy of a young boy with autism, rings close and true to my own heart. It’s never easy, yet you are able to reflect on the experience with great candor…and even a sense of humor! I get to peek into your world through these “come to Jesus” conversations of yours!

Thanks for the shout out! Here’s my contact information for parents with special needs children in Cobb, Fulton, Paulding, and Gwinnett counties:

dinehartm@bellsouth.net
(770) 365 7278 cell

Yours in advocacy,
-aimee (aka IEP Aimee)

Atlanta just isn’t being very southeastern these days - the weather continues to snap back to early spring - March-ish weather (about 55 when we stepped out the door). So with that, Buddy and I had a faster than usual run this morning….not at all due, of course, to the anxieties of an IEP meeting.

We have the agenda, and there doesn’t seem to be anything on it that we aren’t prepared for, or surprised about - but that doesn’t make you less anxious.

So, we run, I make eggs and pancakes for breakfast for the boy, walk him to the bus stop, and walk back. I sit down and start banging out emails on my computer. Maya sits down next me and draws a picture. Just a picture of a little girl (probably her) opening a present. We were talking about my upcoming birthday, so presents were on her mind.

She slid it over to me and smiled. I gave her a big hug.

She’s a very aware child. She may not know what is going on, but she is aware I’m nervous.

I’ll follow this up with a post-IEP posting soon.

Until then, she made me feel a little easier.

We have the follow up IEP for Demetrius tomorrow, and after yesterday’s posting, I’m completely in the zone on this now.

The question has come up about gym and the cafeteria, the noise level and how he just covers his ears/withdraws within himself during these two periods, so to speak. Kim and I are considering possibly going the earphone route to muffle the noise. He loves being with the other kids - when you ask him if he wants to eat lunch with the other kids or eat somewhere else - he never wavers - he wants to eat with the other kids. He’s less enthusiastic about PE in the gym though.

Would earphones help? Possibly, but the stereotyping just becomes more obvious in the mainstream rooms/places if we do this, doesn’t it? Some of these types of issues are a ‘me’ thing (is it best for Super D and/or just some Jerry hang up I have to get over)…but on this one I am really worried that it just seperates him further, literally and figuratively, from the rest of the children…he’ll be with them, but even less so and the looks he’ll get seperates him in their mind…

We should probably try this out this summer in places, like restaurants, etc…where the noises are loud. That might be a good way to evaluate the worthiness of the ear phones and if we want to do this at school next year.

Anyone doing this with their wee-ones? I’d be interested to get some feedback, and recommendations on which ones work best (models, styles, etc…)

Follow up to the ‘Wilting Flower’ post yesterday: Demetrius has two big rashes on the back of legs – heat rashes. Enough said.

I’m going to try a new angle to my postings here: some observations. Not Deep Thoughts, like Saturday Night Live used to have with Jack Handy, but more of the Jerry Grasso type…which I think, fits in no box at this point.

• Adult friends that really try to understand the world we live in ask Demetrius to ‘look at my eyes’ or ‘look at me’ when they talk to him, or he is talking to them
• Before you had kids you thought tired was working late at the office on consecutive nights or pulling an ‘all nighter’ – post-children, that’s called relaxation
• Certain acronyms bring on bad moods, getting mad and/or extreme agitation. Ex: IRS or PMS. Those pale in comparison to this acronym – IEP
• The Internet and all its 2.0 social networks have enabled me to get to know folks from Australia to San Jose, CA to Columbus, OH to Vestal, NY…I know these folks kids, their issues, and their personal pain. For the life of me, I don’t know the name of the couple that owns the house across the street
• ‘35’ is the watershed year. I have two friends with cancer and one dropped dead on a run in Seattle over the past year. These things never happened to ‘us’ before I was 35. Kids change you, your parents decline change you…But personal ‘the clock is actually ticking’ changes to you and your generation - begin at 35
• My inner grumpiness is not so inner anymore
• As you get older, your tolerance to risk and change go up, but it seems your want for it goes down
• When we had the Soviets – you were with them or us. I don’t know who is with whom, or who is against whom, anymore. It seems even within certain countries and cultures, this is unclear
• People who talk too much don’t say anything. People who don’t say anything really don’t have much to add to the collective. People who look you in the eye and say what they mean should say more. This is why I love Hemingway’s writing
• This is why I’m the luckiest guy in the world to have my father and Jim Brabec as my father-in-law. I have two men that can keep me grounded with straight talk and solid advice
• On top of that…the two have zippo in common outside this marriage and the offspring produced from it
• Oh, they also have golf
• And bad lower backs
• Does lower back pain bring on straight talking?
• Golf, on certain days, can lead to bad moods, like IEPs, I have witnessed this from both these two men
• Both married blondes
• So did I
• Does this mean I’ll be a straight talker eventually?
• In life we want it all. I don’t think we hate Alex Rodriguez for getting it, or the guy who took the last three slices of sausage/mushroom/onion pizza at the buffet either. We hate them because they had the chutzpah to go for it, ask for it, or just take it and they got it. Most of us don’t have that chutzpah – for the millions or the pizza, so really our self loathing and/or inadequacies are transferred to them at the moment of realization that they ‘got it’ and we are stuck eating just a couple of plain old cheese slices

• We’ve taught our kids to feed themselves, bathe themselves, write and speak as grammatically correct English as possible – but wiping their bottoms on a consistent basis is just wishful thinking
• And when is the tipping point where the wiping of the bum becomes automatic?
• I often question myself on this sentence: Would I rather be smart and critical or dumb and happy? In today’s world, it seems more either/or than I want to acknowledge
• I’m not sure I know anyone that can answer that question themselves
• Why do we conceptually see heaven as white and hell as red? I look better in blues and tans, whether strumming a harp or moving rubble across a burning lake
• Desert khaki, I think, is my favorite color
• Even so, I still dislike the English Patient – it is like a movie created from a Banana Republic ad
• I don’t want to even think about then, what the J Crew movie might be
• I have to go back to work now. You are lucky if you say instead, ‘I want to go back to work now.’ That one word speaks volumes