Drivers Ed

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It’s early in the morning and Paul is sitting at the table with me, sleep still nestled deep in his dark brown eyes. He is studying for his drivers education test and as I look at the almost 6 ft boy sitting in front of me, I ask myself, where did the time go?

When I first saw the boy in the yellow hat, I knew sure as anything else I had ever known, that he was destined to be in our family. In probably the fastest Korean adoption ever, we were on a plane bound for Seoul within 5 months of turning in our paperwork. It was if the universe knew he needed to be settled.

When we saw him at his foster mother’s house he was a chubby thick-boned sturdy 10 month-old already walking faster than the speed of light. The boy was quick and moved like a prize fighter, bobbing and weaving the entire day. Throughout the apartment the drawers were taped shut an indication of the whirlwind that was to enter our lives.

The day we brought him home, he toddled over to his 7-month-older brother, and swiftly knocked him to the floor. Thus a dynamic was put into place in which whatever Andre had, Paul wanted. It’s a pattern that remains to this day.That first day home I told B, “Mark my words there is something different about this kid.” And there was.

We soon noticed that parenting was harder this time around. First came the tantrums the likes of which I had never seen before. They were like HUGE thunderstorms…in your face, with screaming so ragged and loud that I was sure that eventually the police would arrive at our door. Often Paul would rage uncontrollably for an hours at a time. Obsessions with clocks, then water, then spoons developed which lasted for several weeks and then they were gone as if a magician waved his wand only to be replaced by another. Before the age of 2 we were already consulting with behavioral therapists in an attempt to change the path we were on. It wasn’t until Paul was 5-years-old that we got the autism diagnosis, the Tourette’s Syndrome pronouncement came when he was 7-years-old and the Central Auditory Processing Disorder diagnosis a year after that. Then for two years we had ABA therapists in our home 5 days a week working with both Paul and Andre to help alleviate the most pressing challenges that autism wrought between the two of them. Between weekly hippo therapy workouts, psychologist appointments and daily hour-long neuro reorganization exercises, we barely breathed for 4 or 5 years and when we did it was ragged, coming is fitful spasms, like a marathon runner as he crosses the finish line. Sometimes we were broken and worn only making it through the day because we were on autopilot.

But then, miraculously, things started slowly changing. Fewer tantrums occurred. Less resistance. More control. More sense of responsibility. A new willingness to help out and think of others feelings. Slowly all the years of hard work began to slip into place finally resting where they needed to be and Paul began to mature.

Those younger years were often dark. They were sad. They were scary and they were the most difficult of my life but today I have come out on the other side with a newfound appreciation of my two sons, knowing first-hand all the hard work they have had to put into themselves in order to become the wonderful and engaging people that they are.

These days when I see other parents on the on-line bulletin boards struggling with their children; I try to encourage them and assure them that it does get easier as their kids mature. And when I see their pain and fear sometimes it takes me back to mine. When this happens I involuntarily shudder but then marvel at all that our entire family has accomplished together through hard work, fighting the system, and never giving in/up.

This morning I sit at the table watching as Paul studies for his drivers ed test and I wonder…where did the time go?

 

 

 

 

Lists

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So it is past midnight and I am suppose to get up to leave for the airport at 3 a.m. Of course, I can’t sleep. And why should I? There is just too much to do. Writing out lists…Andre starting his first night college class tomorrow night and I am worried he will get lost and be wandering around campus at 9 p.m. and Nicole and her two babies won’t be able to find him. Where to buy his textbooks and how to cancel the second class he is signed up for should he get into the first.Lists about what meds he is on and when he has to take them, emails to teachers about the fact we are going to be gone and he might just have a huge melt down at school. And the chores he is suppose to do, but in reality will fight his sister about… the entire time we are in Tibet. I hope she spares his life while we are away!

Lists about what time Paul needs to go to school for math tutoring and what time he needs to be picked up. Lists about what to do should be not do well emotionally while we are done and how to call his therapist if he is headed for a breakdown. Lists about the things he needs help with, what is expected of him at school and to tell administration that we will sign the IEP when we return.

Putting up video of Gracie’s 1st place wins in diving yesterday, finishing first all around for her division and also qualifying for state with this one meet. Lists of her practices and trying to find that book she was “suppose” to read during X-mas vacation but didn’t.

Lists about who to call in case of our demise and lists for the wonderful folks that would take our children and raise them as their own. And I worry about what that would do to our kids if they had to go through losing a second set of parents when they have already lost their first. Thinking about that just about kills me. Ridiculous to shed tears about something that probably won’t even happen, but yet, I do. Lots.Because I feel like I would be letting them down when they needed me most.

I look at all these lists and I think, “how they hell do I do all this?” Seriously. I mean when I am living my life it doesn’t seem like much at all but when it is written down for someone else to follow it seems daunting. And this is minus all the doctors appointments, therapy appointments and all the extra’s I have canceled out of their lives while I am gone.

And then I start the list of why I am taking this trip and how much I love B and how much I want to be with him. Just the two of us. Alone. And soon I realize that it is the longest list, as it should be, because for years we have put our children first. As it should have been too. But now, if we want to make it to thirty years we must make us a priority. It sometimes seems selfish. Irresponsible. Indulgent. And it us. And at this point in our lives it is okay. Now if I could only believe that where it counts…deep in my soul.

IEP Services From The School District

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For years we have been fighting our local school district to get our son what he needs in order to learn. Comprehension is sometimes difficult and math often impossible. We have watched him struggle to learn things that others grasp without effort while the school district ignored our concerns. Yet, if he is taught using particular methods he is often able to do the work that is required. Unfortunately, we do not yet know some of the methods that he would benefit most from.

We first realized he was having difficulty with math in first grade. We brought it to the attention of the IEP team. Our concerns were dismissed. In second grade, “It just takes some kids longer.” In third grade, “So he won’t be at the top of his class in math. (Yeah, duh!)” We then paid for him to go to an after school program at the cost of over $400 per month to learn his multiplication tables which the district could not manage to teach him. In fourth grade, he really started slipping but it was “Well, we can’t do anything now because he isn’t failing.” The rage I felt was immense. We were trying to be proactive but the district wouldn’t take our son’s lack of being able to understand and apply concepts seriously. By fifth grade they couldn’t quite ignore it anymore but their solutions and IEP goals were meaningless. He is now in 8th grade and doing math at a 4th/5th grade level. SIGH. I can also say the pathway has been similar for reading and comprehension but not as difficult or severe. In retrospect, the things we would do differently are numerous including taking the school district to Due Process. But the end result is that we have refused to sign his IEP for more than two years and continue to work with an outdated one.This, of course, is beginning to make the district nervous for what it means for them should we instigate legal action.

One of the things we have been fighting for is a GOOD educational/cognitive/psychosocial assessment of our son as we have disagreed with the district’s findings. We feel this is the best way to discover the issues that are effecting his learning and how he needs to be taught to reach his full potential. We have had a well-known and respected doctor in mind to do this assessment who specializes in kids with multiple “things” going on and have been fighting for the district to get him seen by him. Thus far the school district has refused citing their policy (which is illegal, BTW) that IEE’s must be performed within 60 miles of our home. If you understood where we are located you would also know that these types of services are not available here.

It has been a long, hard road with often disappointing results and constant stonewalling from our school district. But after all this time we were just notified that they have agreed to this testing and with it comes a very belated victory for our child which has cost him dearly due to these very purposeful tactics and delays.

Unfortunately, no family should have to go through this. Yes, we have at times hired a lawyer to push our case but the cost is immense and we see very little action for the money spent. School districts often stonewall because most parents cannot afford legal services, they don’t understand the law and districts know that most parents get weary of fighting “the machine” and give up. It’s hard not too. When you are already struggling at home because of the way your children’s disabilities impact your home life taking on a huge school district seems impossible and the educational system counts on that. Yet, by not doing right by our children it puts a future drain on our economy because these kids get discouraged by their lack of understanding/comprehension/accomplishment and drop out of school. They then face a life-time of unemployment or underemployment and the use of social services that could have most likely been avoided had they had some measure of success in school. Prison and gang activity is also a direct measure of the failure of the educational system.

I wish I could say it has been easy but I can’t. In fact, fighting this battle against the local school district has contributed to our ‘almost divorce.’ But I do urge all parents out there to continue to fight for their children’s place in the educational system. I have to believe that eventually we will make a difference.

 

 

First Day Of College

Meet 14 yo Andre. His sense of humor is scalding, his style of dress is prehistoric and he in a bona-fide hero…he saved another person’s life while risking his own. He insists on routine, he is stubborn as the day is long, and he has autism which while not completely defining him gives you a hint of what is to come.

Today was Andre’s first college class. It is hard to express just what I am feeling but I can tell you this…I am very proud of him.

We are fortunate that there is a high school that is located on the local college campus and besides the regular curriculum the kids also have the opportunity to take college classes. The goal is to graduate with a high school as well as a college diploma at the end of their four years.

We are also very fortunate that Andre, despite his challenges including autism and severe ADHD, is able to navigate the system as well as he does. He is a great student and has a very unique perspective on many issues. And while I am glad he has this opportunity I also worry about my 9th grader.

It’s hard not to be apprehensive about Andre as he steps into this new, more mature world that isn’t set up for someone on the spectrum.

It’s not the drugs I worry about. In Andre’s very black and white world, where rules are to be adhered to at all costs; illicit drugs are just not in his game book.

It is not all the bad influences that concern me. Unfortunately, no one is interested enough to go beyond Andre’s quirky behaviors to get to know him yet alone influence him.

It is not the classwork that has me sleeping less at night. With a son who is a human calculator I am confident in his ability to master anything that his instructors throw at him.

What worries me is those who will take his natural kindness and abuse it. His openness to everyone and everything and exploit it. His way of singing through life and squash it. But most of all, I worry about predators, especially sexual, who will see a target who has no understanding of how protect himself and they will move in. And on a campus that offers hims so many opportunities, a campus full of adults, I pray that no one takes advantage of a young man who takes advantage of no one and desperately wants to have one, just one, friend and to fit in. And if I had the chance to say something to all the students about Andre I would say just let him be himself, listen to him and help him navigate when he becomes rudderless but most of all just be his friend…everyone deserves to have at least ONE friend and by being his friend you will be the one who will gain the most.images