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?

 

 

 

 

Being A Mom Sucks Part 3 But Sometimes Autism Sucks Worse

I am in the airport finally going home with the tween daughter of the last few posts. I am excited to see everyone when I get a text from B.

Paul attacked me. He charged me and to protect myself I had to take him down to the floor and hold him there.

My adult daughter, Nicole, who is at our house witnessed this and I get a text from her as well.

I was scared for dad. Dad handled it so well but I was really scared.

I hold my breath and die just a little bit more inside.

Several days before I left for Chicago there was another altercation with Paul involving me. He hurt me in a rage while he was trying to get something that I had taken from him.

Paul has always lived on the edge of rage. Since we have known him and brought him home at 10 months old. His first act upon arriving at our home was to toddle over to his brother and throw him to the floor. It has been some version of this ever since. While they are great friends Andre always knows there is a chance that Paul will get upset and lives accordingly. We all do. It is exhausting at times.

At the age of 11 after much grief and debate, we finally broke down and started using meds to help moderate his ever shifting moods.We have a great med doc who listens with compassion and always tries to use the least amount possible in order to achieve stability. That said, we still have periods of paranoid thinking and depression which has worsened as he hit puberty. Sometimes I want to take him off all meds and other times when I think of doing that I am scared about how bad things might become. Worse. Intolerable. Maybe even dangerous.

And now this. Increasing violence to himself and against us. Not horrible…yet…but where do you draw the line? When you love someone, as we love him, it seems the line keeps getting stretched further out. Further out than you would allow for any other person you come into contact with. There is no aggression toward anyone else except those within our family. Yet I worry that if he was ever involved in some sort of police incident he would be killed because he would run or maybe struggle with an officer and we all know what happens to minorities who do so.

My heart feels like it has been shattered in pieces so many times this past year and I wonder if I can find all the pieces to put it together once again. My mother heart, my marriage heart, my lover heart and my friend heart.

I ache to be and feel whole once again.

Being Mind F***** By Your Kid

 

This happened about five years ago but it still amazes me that I am no closer to solving the problem of not getting mind F***** by my son with autism.

So today I was called to school because Andre was acting up and out. He kept calling out for his stuffed dog, Snuggles. OVER AND OVER AND OVER again. Even kicked his aide which has never happened before…lovely!

So I went to school armed with cleaning products (natural of course) and a trash bag for picking up leaves to add to my compost pit as a punishment. Seems this all started because:

A) I caught Andre trying to take his dinosaur book to school and removed it from his backpack

B) seems I forgot to give him his medicine.

Score two points for the Loser Mom of the Year award. So Andre is cleaning the tables in the cafeteria and it turns out he is having a great old time and would much rather be doing that than to be in class. Project Clean The School backfired on me. Hmmmmmm, my brain is on fire as I try to think about how to stay one step ahead of him.

Today when he gets home, he is still out of sorts and totally misbehaving. Finally, I told him that since he could only talk about Snuggles that I would be taking said stuffed dog and keeping him with me and that if he did a good job at school tomorrow he could have him back; which I might add he went with quite readily which surprised me.

About an hour later his ABA tutor, Amy, is asking him to write down three things he could have done differently at school regarding the SNUGGLES EPISODE. He tells her “Who is Snuggles?” and just starts screwing with her.

“I don’t know a Snuggles?”

“Who is Snuggles again?”

“I don’t know any Snuggles, do you?”

I mistakenly decide to call  his bluff and up the ante. So the next time he says he doesn’t know who Snuggles is I say, “Well, since you don’t know him I guess it won’t matter to you if I take him out to the fire pit and burn him up” to which Andre replies “I”ll get the marshmallows!!!!!!!!!!!!” Amy and I look at him dumbfounded. What this is his best friend since he was three years-old and he wants to roast him right along with the somores? I just don’t get it!

So I try again impressing upon the fact that Snuggles is going to be a heap of ashes when he is done in the fire pit and Andre’s response is still, “Bring on the marshmallows!”.

Now I am caught between a rock and a hard place and I have put my own self there!!!!!!!!! UGHHHHHHHHHHH! How can I do this to myself????? When will I ever learn????????????

For now I have no choice but to march Snuggles out to a fiery demise. So up the stairs I climb like a soldier leading a prisoner to the guillotine. And as I hold the doomed dog in my hands looking at Amy with a ‘please help me get out of this mess’ kind of look; down the stairs comes Paul with tears in his eyes.

“You can’t burn Snuggles up, you just can’t” and the floodgates let loose. “Andre loves Snuggles and Snuggles has been a loyal friend.”…AND… I’LL TAKE THAT…saved by an eight year old.

“You are right Paul and since Andre doesn’t care about Snuggles anymore and you have spared his life he is now yours.” (Thank you Paul. Bless your kind compassionate soul 1000 times over)

 

To which Andre says “Shucks no marshmallows!”

This means, of course, that I will not sleep all night as I try to figure this whole situation  out because it is now painfully obvious I am being mind f***** by a nine year old and I don’t know what to do about it.

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.

 

 

Oxytocin TherapyFor People With Autism

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Several years ago we asked our doctor about using oxytocin a/k/a the “LOVE Hormone” with our sons. At that time the doc said he wasn’t convinced regarding it’s effectiveness and wanted to see more studies. Well, start writing on the prescription pad, Doc, because the results are in.

According to a recent study released by the University of Sydney using one squirt of oxytocin in each nostril twice a day changes how children with autism approach the world and their relationships in it. Both parents and clinicians reported that children with autism were more socially responsive after beginning oxytocin therapy. Increased memory, eye gaze and emotion recognition were just a few of the benefits reported.

In case you haven’t noticed I am all in and the next time we visit our doc I am going to ask to give it a try. It couldn’t hurt and it may do a lot to change how our interactions occur.

 

The Shooting At The Regional Center Touches Too Close To Home

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As I listen to the news about yet another mass shooting I wonder where did we go wrong? As individuals, as a society, as a nation and as citizens of the world? So much hate. So much misunderstanding. Too much religious influence. Too much disregard for others and ourselves. Too much interference in other nations foreign policy with its resulting unintended consequences.

My sons are served by the local Regional Center (RC) where we live. The RC serves individuals with autism, cerebral palsy, seizure disorders and mental retardation. They have allocated ABA services to my boys for several years and help with planning for their future. The people who work there are kind, loving and passionate people who work within the system to get their clients what they need so that they can live meaningful lives and reach their full potential. They are social workers, humanitarians and people trying to make a difference in this world. These are the kind of individuals who work at the RC…underpaid, overworked and empathetic in recognizing that disabled persons are often beat down by a society that ridicules those who are different. Most of all they try to give their clients and their families hope for their themselves and their loved ones with uncertain futures.

In the many years we have been served by the RC many of these case workers have become my friends as we spend time together trying to navigate a system in which the disabled have an unequal playing field where unemployment is rampant and the disabled are not seen nor heard. These RC workers often become of the voices for those who have little resources to take their concerns to the forefront of the political system.

Yesterday, I first became aware that something was not right with the RC when I received a phone call in the early afternoon. I picked up the phone to hear, “This is an emergency phone call. This is an emergency phone call. The Regional Centers will be open tomorrow.” Odd, I thought. Later I turned on the news and witnessed the carnage. I was horrified moreso than ever before, meaning ALL the unending shootings that have become a way of life for a country that in of itself is not suppose to be in a war zone.

So why did this particular act of violence have such an impact on me? Because I knew of these people. No, not the people who were murdered but I do know their co-workers in a different center and I shudder to think if it had been this RC instead. How, I wondered, would I explain this to my children had it happened here? How would I make them feel like the world was a safe place after walking through RC doors for so many years? How will the clients served by the Inland RC ever feel safe again in a world that already feels unsafe by many people who are autistic? How do you explain to a child that some people just view others as pawns in a game that is played with unwilling participants? How do you teach children to trust in a world in which just anyone can randomly shoot you in a restaurant, at work, on the soccer field, or at a concert; especially a child with autism who has already been bullied one time too often in his short life? How do you make them feel safe again?

The true answer is that you can’t because the shooters have taken away something that cannot be replaced with platitudes and pundit ideology…trust and the feeling of being safe. Yet, my kids have also learned that when bad happens that the response in the face of tragedy is the opposite. So while they saw sadness on the tv screen they also saw hugs, embraces, tears and people standing together to face adversity. But most of all they saw the love that fellow human beings can show one another and that defeats everything the terrorists stand for every single time.

 

 

 

Brain where social behavior occurs is different for those with High Functioning Autism

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In a new study released yesterday, researchers at UCLA determined that areas in the brain that are associated with social behavior were less developed and lacked sufficient networking in high functioning Autistic Spectrum Disorder (ASD) individuals as compared to their neurotypical peers.

The study noted that ASD subjects showed an increased blood flow in the frontal areas of the brain which is linked to higher oxygen metabolism in those parts of the brain that are used to navigate social situations. This is opposite of individuals not on the spectrum whose blood flow is reduced as they mature. According to scientists increased blood flow suggests that in persons with ASD there is delayed neurodevelopment in these front areas of the brain that are responsible for social-emotional cognition. The study is consistent with MRI findings of enlarged brain size due to a lack of pruning as the brain develops.

The study also found a lack of long-range connections between the front of the brain and the back. This apparent lack of connectivity means that information is impaired between distant areas of the brain leading to a decreased social responsiveness in persons with ASD.

Researchers hope that in utilizing information gleaned from this study that in the future scientists may contribute to developing an even earlier way to diagnosis and perhaps treatment ASD. And that would be great for families who have young children and are just starting down this long and often challenging road. Because if I am completely honest, and I could have given my sons pills to alter their autism so that social-emotional dealings would have been easier for them their entire life; I would have done it in a minute. For as a mother you don’t like to see your child suffer by being the outcast, being teased, being rejected and being bullied day in and day out. Sometimes the lengths to which people will go to hurt and embarrass others are just mind-blowing. Never mind having to fit in with the other kids, ASD kids often are surrounded by adults who unintentionally/intentionally contribute to their ostracism and loss of self-esteem leading to a high rate of suicide in this segment of the population.

Yet, at some point as people with ASD mature they come to recognize what is unique and wonderful within themselves and these future “treatments” no longer appear to be the miracles that they might be considered to be when a child is two years old. Both of my sons say they are happy being who they are, autism and all. Both do not see a “miracle” pill being part of their lives. And I am happy that they feel that way but as their mother also know that no child or family should have to go through what they have gone through to get where they are now. I find nothing noble in suffering and my children were not put on this earth to be the moral compass and recipients of those without ASD practicing their seven virtues to buy their way into heaven. So while I welcome advances in ASD medicine, I will do so on the side lines. But I will cheer on and support those parents of the future who may be presented with opportunities to change the lives of their children in ways that are most likely for the better. For everyone deserves to be able to reach their full-potential which is something many with ASD are denied.