Every dad has his challenges

Autism is a marriage-ender. That's what I have read. The overwhelming amount of divorces occur because there is little to no time to work on the couple that started it all. Individuals in the marriage miss the needed attention to some part of the couple's relationship that had to take a backseat to the 24/7 micromanaging of autism. If what is missed is missed acutely enough, the marriage dissolves.

These realities cause me to write today with gratitude about my husband, who also happens to be the father of my children, both of whom have ASD. I can't imagine trying to raise the boys on my own, but I also can't imagine a better choice for a dad than theirs. Granted, we both have moments of sheer and utter despair. Moments when Max screams directly into his ear and he can't hear for about 10 minutes. Moments when, because something wasn't put exactly where it needed to be put on the table, we need to hold the contents of the table, and all of its chairs, while the meltdown ensues. Moments when all we want to do is make a "quick" run to pick something up at the store, but cannot just go in and out without making plans similar to military combat tactics. Moments when we ask Ignatius to follow multi-step directions only to be met with his confused face. Moments when our 13 year old is frustrated to tears as to why he cannot handle stress the way some of his peers can, and why they think it's funny when he has a meltdown.

However, despite what is difficult in our parenting, my husband loves our children. It is evident to me on a daily basis. He helps them when they need help. He muddles through his frustrations to work with their issues. The boys adore him, quite literally. And when they draw something that is amazingly creative, or say something particularly profound, or finally reach a developmental milestone on which we have been working for what seems like forever, or simply when we watch them sleep in a peaceful slumber, his face shows how much he adores them in return.

Is he perfect? No. But neither am I, and it's never been my expectation that he would/should be perfect. He does the best he can with what he has each day. I think that's true of ALL good fathers. They do the best they can with what they have each day. So, to all fathers out there doing the same, I applaud you and say, "Happy Father's Day!" Your children (and their children) are the true beneficiaries of a strong and loving dad.

Is there some sort of spray for that?

Yes, I know it sounds bizarre. And yes, I know it has some variables, as it is dealing with the human condition, which is neither stable nor completely predictable. Still, after months of considering this, I have finally purchased and started using a bodybugg. The idea behind the bodybugg
is that, during your waking hours, you wear an armband. This armband has sensors that detect, in essence:

• motion
• heat flux (release)
  
• electric current on skin surface
• skin temperature

Using these four main components, the bodybugg records your caloric output--the amount of calories you burn. It includes the stuff of being alive and upright--getting dressed, doing things around the house, sleeping, and the like. When I awoke, it estimated that, between 12 AM and 7:30 AM, I expended about 640 calories. From the time I put the band on until now (about 8 hours), just doing "stuff," it has recorded a 1000 calorie expenditure. I have not formally "worked out," other than doing a set of 20 sit ups for a Facebook challenge (which expended less than 100 calories).

Along with the band, I also purchased a display which can be worn as a clip or a watch. Without the display, I would have to hook the bodybugg up via USB to my laptop and gather this information. The display refreshes every 60 seconds, and tells you calories burned, steps taken, activity, and the like (I wish it did heart rate) for today or yesterday (when I have worn it more than one day). It's synced to the armband. You don't need the watch, but it's nice to have the info right there.

At the end of my day today, I will sync the armband with the website. Throughout the day, I have entered calories consumed on the site. Data will be transferred to determine a calorie deficit. The science behind this is, if you have a 500 calorie deficit per day, you will be setting yourself up for a 1-lb per week weight loss. It's a measuring device to help you track what was not so easy to track before... how many calories you were actually burning.

So, we shall see. Having the bodybugg does not make weight come off. It's a way to keep yourself accountable. I have been doing activity for months, but I have not been keeping myself accountable about what I am eating as much as I could. This is the next step. I'll keep you posted!

Summertime!

Summer is upon us at the Plato household. Memorial Day is Monday, and Ignatius has two more school days this week before he is officially sprung. Max and I are both done with our obligations of school... Max finished up ECE at Colene Hoose on May 21, and his last day at Little Jewels was Thursday. I completed my tenth year in District 87 and my nineteenth year of teaching in total. Feels weird typing that!

On Friday, Max and I spent our afternoon in the backyard at our friend, Krystal's, house. She just got an in-ground pool installed this spring, and the kids were loving it (OK, the adults were loving it as well). Here is a photo of Max exploring one of the many areas on the side of the pool.

We also met with April, our PLAY consultant, on Thursday. This session consisted of "meeting" Max where he was in play and using techniques from the program to get more out of his communication experiences. Our previous goals remain the same, and now we will be building on them:
1. use "taffy pulling:" stretch the interactions and keep them going by gently teasing or making funny sounds; this engages him and makes fertile ground for his use of language to fulfill his needs
2. use affect in voice in play; continue with simple words, no more than three words at a time; no questioning; use voice intonation to "create" a question
3. use a sense of humor, suspense, and surprise; find ways to make him laugh (pretend you are sleeping and wake suddenly when he gets close; use slapstick humor)

It really requires conscious effort to remember to incorporate this, but there are many times throughout his day that lend themselves nicely to these. Some of these are things that many parents use with much younger children. When he was "of age" for the crazy affect in voice (akin to when you play peek-a-boo with an infant), he was not engaging. So, to a degree, we are backtracking to meet him where he is and guide him forward.

The idea of using only a few words has proven very powerful, and, to those who know me, this is the MOST difficult part for me. :) I have been finding that the most frustrating times involve those moments when I am using way too many words.

April videotaped parts of my interactions with Max and will be sending me the DVD and transcript. She also gave me a DVD of our "baseline" play-based interactions from the first session. She also indicated that, from the looks of how he was engaging in problem solving, she was seeing definite cognitive strength, and she thought he might not have a struggle with the academic part of school based on what she was seeing. That was unexpected, and quite frankly, a relief. We shall see how that transpires over the next few years. She was really impressed with his problem solving ability. We spent a great deal of time at our gate in the back yard. We did "taffy pulling" to get him to express what he wanted (help with opening the gate). When we were not being particularly helpful to him, he found a nearby stick in the yard to help him in his goal. While he didn't completely open the gate by himself, he showed a LOT of efforts in trying to communicate his needs without a whole lot of screaming going on.

I realized that I was getting really good at Max's "language." However, responding to him based on what I knew he was conveying is not enough. I will not always be there to interpret for him, and he must start using words more to assist in allowing others to know his needs. As a family, we have become enablers to a degree... I think that was based on survival.

So, onward we go with our many summertime pursuits. We will be starting the summer reading program at the local library this week. I have plenty of things to keep the boys (and me) very busy!

"You think this is hard?!"

I love the show Glee. It cracks me up on many levels. One of my favorite characters is that of Sue Sylvester. Sue has a series of lines which begin with, "You think this is hard?..." One of my favorites: "You think this is hard? I'm passing a gallstone as we speak. That is hard!"

So, why this little burst of random thought? I just filled out what feels like the thousandth questionnaire relating to autism for Max. As mentioned before, we are participating in a grant-based study called the PLAY Project. Today is our monthly meeting with April, our consultant. I had started to fill out the questionnaires, then figured I had a while to do them, then realized I hadn't finished them... thank God school was over. Truth be known, it takes a lot out of us as parents to fill out these particular questionnaires.

Anyway, it made me think of persons who believe that autism spectrum disorders are overdiagnosed, akin to ADD/ADHD. Since I have been involved with both types of diagnoses, I can say, with certainty, that autism diagnoses are not gotten easily. For ADD/ADHD, as a teacher, I have filled out what seems to be the most popular form for pediatricians: the Vanderbilt. There's also a Conners' rating scale that is used, but that is typically a psychologist's tool. The Vanderbilt is a 1-1/2 page scale with several different statements for a teacher to rate. I believe a parent rates the child as well. I had a student go to a pediatrician one day and come back the next day with an ADHD diagnosis and a prescription.

With ASD, as a parent, I have filled out booklet after booklet assessing both Max and Ignatius. Today's three booklets were the CARS2-QPC, the REEL-3, and the Greenspan Social-Emotional Growth Chart. Before diagnosis, I filled out booklet after booklet. Teachers filled out booklets for Ignatius as well. Then the developmental pediatrician spent over an hour with Max and over an hour with Ignatius. With Ignatius, we went to The Autism Program for an entire day of tests, in addition to filling out their booklets. The diagnoses took close to a year. Am I sure my kids are on the spectrum? Why, yes, I am. Am I sure some of my students who are diagnosed with ADD/ADHD have been adequately diagnosed? Mmm, somewhat.

My blood pressure elevates a bit when I turn on the radio or TV and am assaulted by opinions of persons who think they/claim to know what they are talking about. Anyone that you hear on TV who thinks ASD are being overdiagnosed has done little to no homework on the issue. Parents don't go around saying, "Hmmm, how can I get my child diagnosed with autism?" And the statements on the questionnaires just remind you, again, how neurologically atypical your child is. Every. Single. Time. I get to look at a list of developmental descriptors for my son, and I get to see how he differs from what's considered normal growth.

Yes, since it is a day-to-day thing we live with, one might say, after a while, I'll get tougher skin about the "facts" of my life. Truth be known, my skin is pretty damn tough right now. Until my kids are together with their biological-age peers, or even kids younger than they. Then the skin gets a little thinner. And things seem pretty unfair. I think any parent with a child that has a developmental struggle...be it a physical issue or a social-emotional issue... knows what I am talking about. Field day at the end of the school year, for example. The typical student goes off to school and has a great time. The atypical student might have a physical setback that makes that day extraordinarily difficult, not to mention exhausting, or might have an issue with overstimulation that makes a major meltdown inevitable.

My inner Sue Sylvester wants to scream, "You think this is hard? I'm raising two children with autism. That's hard!"

Max's Graduation

On May 20, Max graduated from preschool. Here is a movie of photos and video from the big night.

Thirteen Mother's Days

In celebrating Mother's Day this year, I reflect upon the gift of being a mother. It can be viewed that being the mother of children with special needs is burdensome. I agree that at times, I wallow in my, "This is not fair," conversation with the Lord. However, what keeps me grounded is the belief that each mother is given her motherhood road to travel.

I think of a friend who recently relayed a story to me about his brother's wife. They found out that she, at 5 months along on her pregnancy, was carrying a child with a birth defect. There was 0% chance of survival for the baby, and the longer the pregnancy went on, the more her life would be in danger. They are devoutly Christian, and strongly pro-life, and now had to enter what I call the "shades of gray" decision about aborting the baby. Her Mother's Day this year had to have been quite a trial.

Or, there's my friend, Julia, who is FINALLY celebrating her first Mother's Day. She has waited almost two decades for this to happen, and has finally adopted her son. Her Mother's Day this year had to have been euphoric.

Our Mass this morning focused a lot on Mary. I kept thinking about how old she would have been when Jesus' public life began... mid forties. And then he was killed before she was 50, most likely. I thought of the struggles that came with her pregnancy and the raising of Jesus.

There's such a wide spectrum of reaction from women who are mothers, who fulfill the role of mother, and who want to be mothers as far as Mother's Day is concerned. Where you are in your journey has a great deal to do with the savoring of the day. So the question is, where am I?

I am truly grateful for each and every day, even the days when I was told my sons were on the autism spectrum. Sure, I would love to change the financial hurdles we have had, or the depression, or the social challenges my children face in an unaccepting society, or even (trivially) the weight gain that all of these years has seen. I won't be naive enough to say there weren't parts that sucked. However, each and every part added a learning element to my life. I think each mother faces challenges, no matter what her child is like. The greatest blessing that I have is to "change the things I can, accept the things I cannot change, and be wise enough to know the difference."

Yard Sale Madness

Apparently, I need to send my husband to garage/yard sales with a chaperone. The good thing is that Max and he have made this somewhat of a Saturday tradition. They go out and about in the neighborhood trolling for deals. Typically, Max comes back with some sort of booty. Last week, they got a light saber for $1 (which is a good deal). Today, Max got this very cool little basketball game. However, he also got Elefun (you may note that he got Elefun for Christmas). And his father bought this wooden shutter thing. Conversation went like so:
~For where?
~For the patio.
~For the patio?
~Yeah, to block the sun.
~Isn't that what the big umbrella is supposed to do?
~Well, where do you want to put it?

Now, granted, he paid $10 for it. He's so proud of himself. But we have no use for it whatsoever. I'm trying to think of something crafty to do with it. I am open to suggestions. I know it can separate spaces in rooms, but I'm a little perplexed.

No more unmonitored yard sales for him.