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!

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Sleep

 

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Sleep is a glorious thing. Sometimes it is even better than sex. (Okay, it is often better than sex according to many women) My entire life I have never had trouble sleeping. If my head hits the pillow and I am not asleep within five minutes, I consider myself an insomniac. So imagine my discomfort and consternation at being unable to sleep the last three nights in a row. It doesn’t bode well for the family.

As I type this I am watching claws replace my hands and my back is itching violently as I scratch it against the chair. Suddenly, going to a stream in Yosemite and dunking my head underwater to catch a salmon sounds enjoyable. And my voice is also developing an edgy kind of roar.Yes, I am turning into a grumpy bear and there is not a damn thing I can do about it UNLESS I GET SOME SLEEP which seems about as likely to happen as winning the lottery.

It used to be I could handle sleep deprivation. Not anymore. When I was younger I could party with the best of them.  Pulling an all nighter wasn’t a problem. When I was in college I would stay up studying until two or three in the morning and get up at six a.m. to get to class on time. Even when Andre was a baby and was up seven to twelve times a night (now I know that can be a sign of autism) I could still function and that was when I was in my forties! But not anymore. Now I just feel like I am going to stroke out as my brain operates with a dull roar going on in the background.

I have tried everything to turn the tide. Soft music. A warm bath. A white noise maker. Going to bed early, going to bed late. Changing beds. Not eating before bed. Open windows/shut windows. Silk pajamas. No pajamas. Flannel pajamas. Aspirin. A three-year-old muscle relaxer from when I threw my back out which comes with a warning not to operate farm equipment when using it. I brought a boring book to bed and then an exciting book. I read every singe research study about sleep and scared the crap out of myself. In desperation I began counting sheep…yeah… I made it to 20, 363 before I bagged one of the annoying little B*******.

At this point I have no idea how I am going to make it through the day. My nerves are on edge, my head hurts and I can feel synapses trying to fire but they don’t have the energy. In desperation I am even considering renting a porn movie on the cable channel because if anything could put me to sleep it would be that. But I’m afraid that if I do happen to fall asleep and the kids come home from school only to see Debbie Doing Dallas I will be out of contention for The Mother Of The Year Award.

Wait a minute…the school district called to cancel our IEP so I am on the telephone explaining to them special education law as it pertains to this case AND thankfully…I feel a yawn coming on!

 

 

 

 

 

 

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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