Tuesday, June 19, 2012

I am a rockstar.

I've got the rolley on my arm and im pourin
chandon …. cuz i got it goin on.

Yup. That’s how I feel right now. Like a boasting braggert rockstar and there ain’t nothing like it.

This morning was Adam’s iep meeting. He does not qualify for services. Let me repeat that. He does not qualify for services. Holy shit, batman.  We freaking did it.  In case you don’t know how it all works, when a kid is under the age of 5, and disabled, they are given the label “preschool disabled” and given services depending upon what everyone thinks the kid needs. Then upon turning 5, they get tested. The kid has to fit one of 13 categories. The kid gets labeled and services are provided based on what everyone thinks the kid needs. (fighting can occur over what everyone thinks the kid needs).

They went over their test results. He took several tests- tested by the psychologist, and a LDTC (Learning Disabilities Teacher Consultant) and a Speech Therapist gave him Language and Speech tests. He took cognitive assessments and tests on what he already has learned. He performed in every single subtest in either the average range or high average range. He was seen in his classroom and is social and discussed many things with the examiners. He has friends and focuses in class. He loves Karate and swimming.

The 13 categories are:
·         Auditorily impaired
·         Autistic
·          Cognitively impaired
·          Communication impaired
·         Emotionally disturbed
·          Multiply disabled
·          Deaf/blindness
·         Orthopedically impaired
·          Other health impaired
·         Social maladjustment
·         Specific learning disability
·          Traumatic brain injury
·         Visually impaired

Adam does not fit any of these 13 categories. Yes, he still has feeding issues and a device surgically implanted in his stomach (g-tube) but it does not effect his learning and education at this time. Yes, we have no idea what the future will bring but- he does not qualify for services.

He was born 14 weeks early, weighing 1 pound and 4 ounces. He spent over six months in a hospital. Received a tracheotomy, which he had for over 2 years, where he could not make any sound out of his mouth at all for his first 2 years of life. He had occupational therapy, physical therapy and speech therapy for his first 3 years of life every week. We had nurses in our home for 16 hours a day for 2 years straight. He spent an entire summer receiving 4 therapies a day. Once a month he goes to see therapists and experts. He follows up every 3 months with his eye doctor, gi, ent, pediatrician and pulmonologist. He has had 8 (I think?) surgeries. He has spent the last 2 years attending 2 different schools each day with one on one para, trained highly qualified teachers, push in and pull out speech services and an inclusive setting in the afternoon.

We have been trained in Pecs, beginning sign language and read a lot of crap. We went into debt. Crazy debt. I took 6 months off of work, Phil took 2 years to do a different job altogether with a huge paycut. Matt has been the greatest big brother known. We have had our family and friends help us beyond anyone’s imagination.

Today they told us that Adam will go into regular kindergarten in September.

Our attorney was shocked, pleased and couldn’t believe that this was the same kid she worked and fought for over 2 years ago. I cried. Both of Adam’s teachers cried and hugged me today. The nurse cried and hugged us. At Adam’s inclusion setting, the principal cried. She said that she remembered him from 3 years ago. He couldn’t even say any words, he used his pecs book and had tantrums refusing to stay in his seat. She hugged me and cried and said how amazing he is.

Now, I’m not sure what the future will bring, and I know we still got some stuff to work through, but today, today we were rockstars. I’m a bragging and a boasting and a toasting.

Here’s to a crazy freaking 5 years.

Friday, June 15, 2012

do right

Adam is finishing up preschool this week. Next week is Adam's iep meeting. As I mentally prepare myself for what’s to come in September, I am reminded of where we’ve been.

Just before he turned three, we sent a letter to the public school system and requested that he get tested. Adam was already having early intervention and therapy sessions, was tested and to no surprise was found eligible. He was classified “preschool disabled”. We had his iep meeting and agreed to placement in a self-contained preschool program in public school for half a day.

I consider myself middle class, and the idea of hiring an attorney to help us navigate the public school special education world seemed very elite.  We are public school people, not private school, nanny people. I’m not a Kardashian, I don’t have a family attorney, a yacht, Louis Vuitton luggage.

I didn’t even use an attorney when I got divorced…twice. We went through a mediator to save money and we filed the paperwork ourselves.  Also, I am a teacher. Not just any teacher, but a public school, special education teacher and Phil is a teacher in a public school. Dare I say it, but we are overeducated. We are well read. We can totally handle our son (then 3 years old) getting tested and entering into the world of ieps and public school. I can read the parent book they gave me. I got this.

Within Adam’s first week of school in May of 2010, all of the following occurred:

Ha. Now I don’t want to name names, or point fingers, As Beyonce sings, “I don’t want to diss you on the internet cuz my mama taught me better than that”. I’m not going to list The Top Ten Ridiculous Things Said To Us By Public School Employees. Know that there could be such a list, they are real and they happened.

I got very upset and angry during Adam’s first week of school. Rules and laws weren’t followed and ridiculous things were done and said that were simply f’in nuts. We were spinning in circles and trying to reason with people and were overwhelmed. I couldn’t sleep. I felt like no one understood. I contacted agencies (many long waiting lists and people are understaffed and overworked and there’s not enough advocates). I cried to friends, had long conversations with everyone. I was discouraged and saddened by the long haul that would be the next 15 years in public school.

My son is labeled preschool disabled. That already is an emotional thing for someone. I mean, as a pregnant mother, I had these visions of my child going off to play MLB, while winning a Nobel Peace Prize and finding the cure for all cancer while playing the violin blindfolded. You never think, oh, I hope I have a child who gets labeled and people limit his life.  When this label is thrust on you, you have a lot going on. It’s not easy to get back into perspective and to count your blessings and open doors. I was kind of wallowing in my own despair. I needed caring.

I work with really great teachers and a caring child study team and I was na├»ve to think that everyone else in the field of educating special children is that way, too. We were dealing with several people who didn’t love our child, didn’t share our philosophies on inclusion, on child rearing, on education. I could not take my life experiences and my knowledge and demand that they agree with me. Tie them up and hypnotize them so that they see the world the same way as I. We were frustrated by their ignorance. I also could not distance myself from it. I thought that all my special education training and education would help navigate this system, but rather, it didn’t matter at all. I became enraged. It was difficult to not hit people. And there was no escaping, it was all consuming. Every single part of my day was spent thinking and worrying and getting upset all over again and then the next day something else would happen and it would reboot and restart.

We hired a lawyer. Now, it’s not like we had the money for this elitism, like I wrote a check and actually had the cash for this. I believe that is why they have credit cards and that I am lucky that I didn’t have a crazy high balance from too much shoe shopping and we couldn’t really fathom a vacation in the near future anyway. 

The lawyer took all the worry away. The lawyer fixed it.

As a result, Adam just finished an amazing 2 full school years in a public school self contained preschool classroom with two amazing teachers and several amazing paraprofessionals and a dear bus driver who buckles Adam into his little 5 point harness and gave us her cell phone number and calls us on the phone. Phil and I can look back on those notes from just over two years ago and laugh now at the fear and ignorance in what happened. We actually were cracking up this past week remembering the crazy shit that people said to us during that time.

I have a supportive partner, an education, an amazing family support system, friends who kick ass, a job, am a native English speaker, am comfortable in the school as an institution, an outgoing personality, I have a good credit score and I speak my mind. They broke me down. If they did that to me, what hope do others have?

How does a parent who hates school and gets nervous with authority fair at these things? How do you know whom to call within this monstrous bureaucracy? How clear really is this process when you are from another country? What if you don’t have a job or resources? What if you don’t have friends and a supportive family network? What if you are embarrassed by your child’s label? What if you blame yourself? How long can you wait for a public advocate to get to you on the list?

That would be one of my many wishes, you know that daydream where you win like a bizzilion bucks and you help all if you could change the world wishes thingys.

The wish for everyone to just do right.