Monday, July 30, 2007

School daze

Ok, now is registration season- and I remember how hard it always is to get the papers I need for my autism boy from his school. . .hmmmm

The powers that think they be at his school believe that all kids with special needs should be in special classes. . .and lobby very hard to get their way. . .only thing is, I am too much of a stubborn bitch to allow anyone but me make decisions for my child, so it has been non stop confrontations for the 3 years he has been at the school . . .and we gear up again!!

Back is better- kids are squirrely, and I am DREADING the start of the school year- my baby is a SENIOR this year. . .damn that went so fast!

Later!

Wednesday, July 18, 2007

Autism unawareness

Ok, so, maybe this is not an autism thing- maybe all parents with special needs kids get this deal- the "how can you manage to work/have fun/go places/be normal with an autistic kid?" look.

Today when we were at the store- the "wow, he looks so NORMAL" and the "you just cannot tell he is retarded" comments were busted out again. . .GRRRRRRRRRR.

OK, the back is sore, the bitchy moon is in the that time of the month house, AND it was just me and Precious. . .soooooooo

HE IS NOT RETARDED! AUTISM DOES NOT AUTOMATICALLY MEAN BRAIN DAMAGE! I would appreciate it if you would NOT refer to him that way because whil he is autistic, he is NOT DEAF! GOOD DAY!!!!!!

I know that dumb asses are all over the place, but puleeeeze, ignorance can only be an excuse for so long. . .especially with autism being the chi chi ailment now. . .

Tuesday, July 17, 2007

Because She was a genius!!!!

Miss ya Erma!

Do you know what you call those who use towels and never wash them, eat meals and never do the dishes, sit in rooms they never clean, and are entertained till they drop? If you have just answered, "A house guest," you're wrong because I have just described my kids. Erma Bombeck

Don't confuse fame with success. Madonna is one; Helen Keller is the other. Erma Bombeck

I haven't trusted polls since I read that 62% of women had affairs during their lunch hour. I've never met a woman in my life who would give up lunch for sex. Erma Bombeck

Worst. Pain. EVER!

The bad back. . .I will never joke about it again!

It has often been written that to be a mom means no time off. . .no vacations, no sick days, and yes, we smile wry grins and keep on going. Until we break something. So, on the mend, but OMG what a forenight!

So, sensing weakness in the Rainmom- the darlings decide to have a bit of fun pushing the enevelope. . .and paid accordingly. Like when I hobbled up the steps to the 17 year old darling's room, after being told it was clean before he went to YET another function to find the Dead Marshes in my house, complete with dead clothing (ripped, dirty, not put away). . .score 1 week of hard labor under my watchful eye starting today. He is in the garage ostensibly doing the "prep" work for the big clean. . .yeah

My frustration with my son's autism therapy program is getting worse, and yesterday with the final straw. Long story short- the new regime wants warm bodies, not quality therapists, so the current "warm body" on my son's team is an umm, UNDERMOTIVATED to the point of catatonia human, with Zero initiative. When I am backon my feet, the fur will fly. . .a (Lack of)Progress review at the end of this month will be BIG FUN for my senior therapist! NOT!

I will explain the rise and fall of the best autism program ever next, but for now, I leave you with this, it works, even for Jews:) ;

The Special Mother by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."Finally he passes a name to an angel and smiles. "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel.""But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy.""But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."

Friday, July 13, 2007

Tao of the broken back

Ok, so some of you have been letting me know that the number of posts has increased- yep, it is time again for my back to be out of service-same time as last year!

So, as I wage war on the intense spasms of the back muscles I still have. . .I have had a lot of time to think about things some ramblings. . .

white/off white walls are REALLY boring!

I will be painting before summer is over

It is REALLY hard to raise kids home for the summer while in pain!

Tuesday, July 10, 2007

Top 10 reasons autism is like fame

One of my friends, who is also an autistic mom, says that having an autistic kid in her small town is like having a movie star life. People stare, point, say really terrible things in full view of child and "normal" sibs. . .you know, all the things the elegantly wasted glitterati complain about. . .no privacy. . .intrusion on life, well, you get the point.

Of course, I understand completely. . .so I have found it therapeutic to make fun of all things painful! So, here is the list!

10. All the offensive close ups! I will NEVER be ready for my close up, Mr. Deville!
9. Having to answer the same old "what's it like" questions as in what's it like to have a brain damaged kid? what's it like raising a retarded kid(that was from someone I THOUGHT I knew) What is autism like? Does he count good? Is he good at cards? GROAN!
8. The annoying habit of people speaking very loudly and "properly" to my son. He is autistic, not deaf!
7. The awe inspiring power of revealing your "celebrity status" of being an autistic mom. That is SO chic! Where can I get MY autistic kid?
6. The default assumption that you are the perfect parent, and can help all "normal" parents appreciate their normal kids. And that leads to the constant requests for advice. If it comes close to working for an autistic kid, think what my kid will do with it! Kind of like the whole ecocelebrity thing. . .Johnny Depp RECYCLES, OOOOOOOOOOH we should too!!!!!!
5. Invoking the autistic savant of the day. . . and having your child compared to that person. I heard Moses was autistic. . .does your son have that Moshe like quality for leadership? EEEEEEK!
4. Having to constantly dodge the opportunity to comment like a Rabbi/Maven on all things autistic- Holly Robinson Peete be damned!
3. Having your past scrutinized to discover your sins. . .for the common good of finding the "secret" behind autism. i e. She has a FREAKISH interest in Sociology. . .and since all of the great sociologists from Simmel to Goffman were all on the autism spectrum. . .hmmmmmm
2. The cult like status that goes with the label- and the possible damage done by missteps. . .Holly Robinson Peete!!!!!!!!!!!!!!!1

And the number 1 reason-

The pain involved when autism shuffles off the public radar and no longer merits research interest! So, I will miss it when it's gone and resent it while it's here!

Sigh

Monday, July 9, 2007

Struggle continues- Letter to the not so superintendent

I am at a loss to express my profound disappointment that you missed the scheduled meeting today. I am very frustrated by this situation, and this missed meeting certainly did nothing to resolve anything, quite the opposite.

My husband and I were at the at 4:25pm, and left shortly before 5pm. The meeting time was 4:30pm.

I am expecting you to contact me tomorrow to reschedule.

{Rainmom}
The New Year Rings in. . .

Hello again,

My name is {Rainmom} and I have written to you a few times about my son. Once again, I would like to tell you how wonderful my son has been doing at his school. I am so proud of him and the progress he has made.

Although I had worried how the summer lag would affect his behavior last fall, he surprised me at how willingly and eagerly he began his studies. His new teachers have brought out the best in my son, along with the other members of his educational team. They have all done a remarkable job, and I could not be more pleased and supportive of their efforts on my son's behalf.

Sadly, the relationship between my husband and I and the current principal of his school has not improved. In fact, events in the past 2 days have actually brought further deterioration of that already shaky relationship. This person continues to treat my husband and I with an utter lack of respect, and has been very inappropriate in her conduct. We are both in agreement that her conduct needs to be brought to your attention, and some sort of understanding reached.

We are not going to remove our child from the loving and supportive environment he is now in, we do not feel that would be fair. However, we also no longer want to be subjected to the unprofessional and rude treatment of the current principal.

I am asking that my husband and I be allowed to create a chain of contact, in lieu of face to face contact with this individual from this point forward. She has made it very clear that she is not interested in respecting us, and our concern for our son's special needs. While we have been contemplating our options under the ADA as well as FERPA, neither one of us wants to act without giving the district a chance to work with us. We feel we have ample support for a formal complaint against this person, a pattern of behavior that goes beyond the events of the past 2 days. Yet, we want what is best for our son, and what is best for him is his continued path, at this school, with the great people he has come to love. It is not about anything beyond that.

I wish to meet with you this week, and discuss plans that can make the rest of his school years at this school uneventful and happy. It is in his best interest for us to come to an understanding with this person, and to create the framework that will allow for communication as well as respect for our status as parents.

I look forward to hearing from you or your representative to set up a meeting.

Sincerely,

{Rainmom}
Dear Holly,

Can I call you Holly? Like I need your permission! Just wanted to clear up a few things after reading your "courageous" story in People. . .puleeeeze, how hard is it to be "courageous" in your position? Chatting with other celebs about damaged kids and damaged plans, blaming autism on the MMR vaccine? Oy, what drek!!!!!

As vomitous as it was to slog through your story, I have to say that one of the most egregious aspects of your "coping with having an autistic child" was your statement about having more children in 0rder to deal with the burden of having him! Thank you would put into print the ludicrous belief that by having MORE kids you would be ensuring a lifetime of care for your autistic child shows a shocking lack of forward thinking and trust in the progress you child can make! To assert that you were not going to burden his twin with his care in his adult life and that you somehow believe that by having MORE children will ease or erase your responsibility to him after your death is jaw dropping! You are an actress, your husband pulls down a lot as a former NFL player, it is YOUR responsibility to make sure your son has care,a place to live, and money. . .not your children, and certainly not social welfare programs. Let the single moms and the working poor use that money for their kids, ok, Holly, old pal? Buddy?

You give autistic moms a REALLY bad name. . .and I for one am not willing to be associated with your X files conspiracy theory for the cause of autism (my son was symptomatic WELL before this immunization). . .what a load of crap you have shoveled into a national magazine. . .gag! I can just imagine the shaking heads, the clucking tongues, and the sighs of "she is so brave. . ." You have nannies, private schools, and affluence. . .some autistic parents have NONE of that- some autistic dads have to work 2 or 3 jobs to support their families, because there is no daycare for their special child. . .but yet, YOU are the brave one. . . ick!

So, Holly, I will have to say that far from brave, I think you are an absolute whiner and a pity party in your honor must surely be held every month to remind us non affluent autistic parents of how brave parents act. . .better go jump on my husband now. . .start the process of making little caregivers for my little angel. . .oy! Whine on Holly!