Eat Chocolate Cake

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The school called today

Andre didn’t turn in his homework

He said he burned his book

I don’t think so but…

I eat chocolate cake while I contemplate the situation.

The other school called about Paul

The teacher tells me there is a group issue

Paul is missing assignments

I will check and let you know….but first

I eat chocolate cake before digging around in his room

I go to the school to discuss the situation

I let all involved know

That Andre will be staying after school in the tutoring room

Everyday until all the assignments are done

He clings and claws at me

He baby talks and pouts

I escape and walk around campus

And eat that emergency piece…

Of chocolate cake

That I tucked in my purse

Really this is getting too much to manage

Maybe I should turn to booze

And give up the chocolate cake

We get home

Paul is upset because I insist that he does his chore

That he did not do before he went to school

Man, that chocolate cake looks good…tastes better than it looks

Two boys with autism

One deep dark chocolate cake

Almost gone…

Autism makes you fat!

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.

 

 

“A lake that is noisy cannot reflect anything” – Robert Adams…290 Days TO Fix This

Years ago, when we were first married I bought our first picture for our house. Little did I realize at the time of purchase how much art mimicked life. Our life, in fact.

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The painting consists of two swans. One bird is serene and just floating along quietly. Obviously, if we apply this to real life, this swan is definitely B. The other swan is upright, flapping its wings, chest out of the water and making such a ruckus it looks like it is going to stroke out any minute. That would be me. And this is pretty much how we have lived our lives. Me… upset about social injustice, corrupt politicians and suck-worthy IEP meetings. Meanwhile, B stays in the background gliding around effortlessly while making noise and flapping his wings only when truly necessary. Think emergencies or boys being truly bad. And guess who people respected and listened to…yep B. I’ve discovered that no one likes a noisy bird.

Finally after many years of being upset and squawking over just about everything, I made a conscious decision to change. I decided I didn’t want to be the flapping, stroking-out swan anymore; instead I wanted to be the serene swan whose stillness reflects her inner beauty and confidence over wide swaths of the quiet lake. I wanted to be the swan that was listened to and whose wisdom was sought.

And there is another major reason for this change. Noise. I have discovered that noise creates chaos and chaos creates pain in numerous different forms. I now understand the beauty of living a life with much less noise/chaos leading to increased peace, harmony and understanding for all members of the pond to enjoy.

So now, when I look at the picture it serves as reminder of conscious change.  Further, when I glimpse the painting, I no longer believe myself to be the flappy-crappy swan. Now I see myself as the noble swan.  And now because of the stillness of the swan it allows the tranquil pond to reflect back the quiet confidence of this beautiful old bird as it glides silently by.

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Happy Birthday

Yesterday Andre turned 15. It hasn’t been the easiest journey getting him there.

Autism sucks. The endless meltdowns, constant push backs and never-ending trips to the schools. Countless hours of driving back and forth for therapy: hippo, occupational, psychotherapy just to name a few. The still unresolved issues of cleaning up after himself and throwing wrappers wherever they land. And the inability to consider other people’s interests and emotional needs instead of his constant “ME, ME, ME” thinking can leave me discouraged and exhausted.

Putting Andre on numerous drugs to control tics, anxiety, and severe ADHD wasn’t on my radar. I hate using these medications the combination of which can cause side effects that go bump in the night. And the cost, even with insurance, is astronomical. But managing him is easier with them than without and he doesn’t like how he feels naked and exposed when he forgets to take his meds.

Having two boys with autism has put our marriage under stress and considering divorceimages-5. Disagreements over how to approach IEPs, how to get Andre to comply, where we should be putting out money in our never ending quest to get the boys the skills they need to navigate life. Being totally exhausted hasn’t done wonders for our time together, especially in the bedroom.

I have been at my best and at my absolute worst because of autism. I have fought harder than I ever imagined I could trying to get services. I have loved fiercer than I ever thought I knew how. I did mundane tasks repeatedly in hopes that Andre would “get it.” I have also yelled louder, gotten angrier than I ever thought I was capable, and said a few words I desperately wish I could take back. Autism has at times brought out the Jekyll and Hyde in me and taught me things about myself I desperately wish I did not know. And PTSD-like symptoms still linger when I hear prolonged screaming.

But to his credit. Andre works harder than any one I know just to survive in the world. He fights anxiety, he has severe insomnia, bright lights bother him while loud noises used to do him in. Socially, he lives in a very isolated place. He wants friends but doesn’t know how to act so that people want to spend blocks of time with him.He is very close to beginning work on his Eagle Scout, he has saved the life of a elderly woman, and he carries amazing grades in school. He loves band, once memorized a 200 page book word for word, and he can name every dinosaur known to man including where they lived and during what period.

Recently, I asked Andre if he could take a pill so he would no longer have autism if he would do it. He replied, “No, because this is who I am and I like me.”

And even though this autism journey with Andre and Paul is not the one I signed up for (think European Cruise vs Survivor in the Outback); I also know that my boys are becoming young men who are an asset to the community and our family. They will make their way in life. It may not be the life I envisioned but both boys can and will make a life that they are happy with and can be proud of.

Yes, autism sucks but for some kids with this disorder there is a light at the end of the rainbow and in this past year its brightness has intensified and let us see the light where darkness once roamed. Autism sucks but it does not rule us.

Happy Birthday, Andre. You are deeply and dearly loved. I hope others will learn to accept and love you too.

Who I Really Want To Yell At…Upcoming IEP…Shoot Me Now

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So we have an IEP coming up. Any parent who has ever participated in an IEP meeting knows the special kind of hell that is reserved just for us.  It is a game for adults while the pawns are the kids. These are children whose lives can be changed for a lifetime if they only get the help that they so desperately need. Parents wrangle to get what their children are entitled to under the law while school districts try to keep their budgets in line or just disagree for purely reasons of precedence. And with an unfunded federal mandate to provide these services to those in need…well, it truly is a no win situation except in the simplest of cases.

This time when I walk into that room with principals, teachers, school district big-wigs, and lawyers I want to say something meaningful, poignant and straight to the heart. What I want to say is this:

“Every year parents of special needs children divorce. In fact, according to statistics provided by various sources it is estimated that 80-90% of couples whose children are considered special needs divorce; thereby disrupting the most vulnerable of families. These are families in need of two adults in a household to co-parent and provide support to one another while they manage hour-long tantrums, disruptive behaviors, and the close supervision that is often required of children with autism and other neurological conditions. Divorce is ugly. It changes the hearts of both children and adults. It makes kids feel unsafe and unsure about their future.

So why am I telling you this?

Unfortunately, our family may soon become one of these statistics. Although we are fighting to stay together I don’t know if we will win this battle. It is ironic because we have stayed together for 29 years with ABA therapists in our home 5 days a week. We have made it through home safety issues, seizures, special diets and numerous calls from the school. And we are tired. Worn out. And haven’t had time for one another for so long.

So what does this have to do with you and how can you help?

Do what is right by our children. Honor our requests instead of just setting them aside and ignoring them. We know our kids and often we know exactly what they need. Think in terms of the far off future and outcomes that will ensure that my child will one day be a tax paying American instead of someone who needs assistance their entire life.  Provide those things you would expect for your own children or grandchildren. Think beyond and outside of the box. Do what is moral, courageous and honorable. And do it now. Stop being intentionally adversarial and work from the belief that if we cooperate, children with special needs can and will reach their full potential; thereby benefitting this community and nation.

Finally, I am letting you know that while I do not blame you for our marital issues, I do want you to be mindful that the constant extra challenges such as IEP meetings add extra layers of stress on top a marriage that can cause it to eventually sink. Remember these IEP meetings are not a game and our family is not something to be manipulated and discarded without regard. We are people trying to do our best in situations that most of you cannot truly comprehend.

In conclusion I ask you to take to heart the words of James Rachel who said:

“Principles of justice are principles that rational, self-interested people would choose to govern the society in which they were going to live, provided that they did not know, at the time they chose the principles, exactly what their own place in society would be” “– James Rachel’s forward  to John Rawl’s  book, Two Concepts of Rules.