Please take note of the title. Steve’s LONG path… this post is a doozy. This one is LONG. Full of information and anecdotes. However, it is the truth. It is Steve’s path. Sit back with a cup of tea and see if you can pass this along to someone you know, that may need help. Enjoy the view on our path…..
A dear friend asked this weekend how it all started with Steve. Not how did I know (that’s another post in and of itself), but when he was diagnosed, what was the path. It got me thinking about just how far we’ve come in the past 6+ years.
When Steve was 2 and a half he didn’t have words. They just were not there. We, (my ex-husband and I, but mostly I) asked that he be looked at but no one wanted to “label” him. He did however get a diagnosis called Apraxia of Speech.
This diagnosis led us to receive services from a place called, Holding Hands (their website is: http://holdinghandsinc.com/ ). Once at Holding Hands more assessments were done which opened the gates to not just speech therapy but also occupational therapy and floor time therapy.
Our stay at Holding Hands was short since without an official diagnosis of Autism, the continuation of services past the age of 3 was not permitted.
At the age of 3 we were referred to the home school district. This was very strange to me to be sent to school when he wasn’t yet at the age to attend Kindergarten.
It was then determined that he would qualify for the Special Day Class at a pre-school run by the district. Here is where our sheer dumb luck took over. Not knowing any better and being a full time working mom, I simply stated the obvious, “What am I supposed to do with him the rest of the day?”
“Well,” the school district said, “I guess you can pay the full day rate and when he’s not in the SDC (special day class) he can be in the regular pre-school room.” Dingbat me never knew I could have said, should have said, “Maybe we should negotiate a rate more sensible to the amount of time he will be needing your regular services.” Instead, I said — Yep, you guessed it. “GREAT!” Just like good ol Tony the Tiger taught me to with my hand held HIGH in the sky. I WON, right?
So that’s how life lasted for a couple years. We paid too much, but by George, every day little Steve had somewhere to go. He was looked after, even if only by unskilled people in the areas of special needs. I had a babysitter.
From there, Steve, was reassessed again for the “transition” to Kindergarten. Only now, Steve had been receiving speech therapy to which he took amazingly to. He had been receiving occupational therapy, group social therapy. Steve was making progress but Steve still didn’t have a diagnosis except, Apraxia of Speech. Only problem, Steve could speak just fine now. Speech therapy worked WONDERS… oh he could speak alright. He could scream. He could yell. He could pitch a royal effin fit like no-other. But he could speak. Therefore, he no longer had Apraxia of Speech.
Well. I do not know a lot, but I knew that kid would DROWN without the support of Special Education. There is no other word for it. That kid was being thrown in the deep end of the pool with no life jacket and he has never had swimming lessons. I can say I KNEW this to be fact based on how he behaved when he left the safe environment of 10 kids and 3 teachers of the SDC class into what I now know is called the general education classroom. In the Gen Ed Class there were 20-25 kids a teacher and a part time helper (Yes, people near to me know I call this idea of a “class” GEN POP, as in, you know, a room full of people with their own agendas and one lonely officer trying to keep the peace.)
So when it came time for the IEP transition meeting I was floored when they told me my son would no longer be qualified for Special Education Support at the Kindergarten level.
I broke down in tears. Right then. Right there. In a room full of VERY intelligent people who at the time I felt knew a great deal more than me. I begged them not to do this to my son. I didn’t know what he needed, or what his issues were but I just kept saying over and over, “I don’t know WHAT is wrong with my son, but something isn’t RIGHT. There MUST be SOMETHING you can do.”
You see, what I know now, that I didn’t know then is this: They knew, the SDC teacher, the school psychologist, the school speech therapist, the school occupational therapist, the rude district representative, they knew what was wrong with my son, but they were not legally allowed to to tell me. They are not legally allowed to “diagnose.”
Finally, FINALLY after several hours in the room with these people. Throwing out term after term. Acronym after acronym at me. Trying to tell me my son was not going to get support at his home school kindergarten in a way in which this confuse mom would understand… a little voice spoke up. Looking back now, I can’t remember her name. I can tell you she was blonde. I can tell you she was wearing a yellow shirt. She was seated in the 3rd chair on the left side of the table. She spoke up… she said what are now my 2 favorite words in the English language…. she said…. “What if?”
She wasn’t really even speaking to me. She was speaking to the team that was supposed to be on my side but was telling me instead they were no longer going to help my child. She said to them… “what if… what if we put him on a 504?” “504? What’s a 504?” I asked quickly shooting upwards in my seat? “Give us a minute, I promise I’ll explain it, let us talk,” she said to me. They mulled. Talking on top of each other. As much as I was trying to follow along I couldn’t, I didn’t understand the vocabulary. More God-Damned acronyms! I FUCKING HATE ACRONYMS!
Finally, I heard, “yeah, we can do that.” And a smile came over her face. Mrs Gutierrez (yes, still married back then) I think we have an answer for your son.
Steve, can be placed on a 504. It kept a baby toe in the door on the way to Special Ed. The 504 identified my child as a child that needed accommodations made in the classroom. Based on his current behaviors and such in the pre-school setting they deemed it necessary for evaluation of his well being moving forward. That an answer to what he needs in Kinder setting can not be generated at the time, so they would make accommodations for him and evaluate him for the first few months of Kinder to see how he did.
“I’LL TAKE IT” – I stood up and YELLED!!!!
“We have not even told you what the accommodations are yet?” I responded with, “you gave my son a life preserver, do I REALLY care what brand it is?”
The next step for Steve was Kindergarten. The accommodations they gave him were things like: sitting him, while on the carpet, closest to the teacher so she could keep a better eye on him. His desk would be nearest to the teacher so when work at the desk needed to be done, she didn’t have to go far to help him out. Someone would be making sure he was playing respectfully with the other children at recess. Things like this were all on his 504.
Then… again… by sheer dumb luck… we got the BEST kindergarten teacher available to mankind.
His teacher, (whose name I will NEVER forget but I have not gotten around to asking her permission to post) not only did all the things she was asked to on the 504, she asked me to send in a composition book because she’d like to keep some notes on Steve’s progress. By the end of the year, the angel had filled up FOUR composition books sometimes writing several pages per day documenting for this kids every single solitary struggle he had and she had with him. This documentation came in VERY handy at a later date. She also made a behavior chart up for him. Broken down by activity in the room (which were mostly broken down by time frames). Smiley Faces for good sections. Sad faces for not so good sections. Squiggly faces for so/so sections. When you are 5, and you know mom is going to see this, sign it, and send it back, faces are all you need. This behavior chart sat on his desk all day long, at the end of the day was put into his backpack to go home.
I mentioned his road has been long right??? Ok so we keep going…..
Thanks to the saving grace of this teacher, (or Godsend, whichever you prefer to call her) we were able to work on getting Steve a diagnosis. After 2 months, all of his teachers notes in the composition books, several trips for hours downtown, lots of missed school, and a few thousand dollars (pety cash right?), we got another breadcrumb…. ADHD Diagnosis (with autistic like characteristics for good measure) from The Boone Fetter Clinic at Children’s Hospital, Los Angeles (http://www.chla.org/site/c.ipINKTOAJsG/b.4175423/k.A43B/Boone_Fetter_Clinic__Autism_Clinic_for_Children__Los_Angeles.htm#.VQh2nqOa8sc).
That was enough for the school to now put him officially on an IEP (Individual Education Plan).
Why did we push harder than the 504 if it was such a big help? Because in Kindergarten, the wheels fell off my kids bus. No, that’s not true. The wheels, the paint, the bumpers, the windshield washers, the windows and the spare tire fell off my kids bus. LITERALLY. Meltdowns (not tantrums, there is a very BIG distinction in my book) happened multiple times a day. Aggressive behavior toward his sister and his peer sky rocketed. His attention went belly up. His self soothing actions became more prominent and dangerous (chewing through electrical cords and masturbation during class to name a few). No learning could happen due to the level of unacceptable behavior. All of this is what the teacher documented for us.
Once we had a diagnosis of the ADHD I called another IEP meeting and in that meeting it happened again…. A small voice spoke up… “What if?”….. my ears jumping to attention…… “yes…..” I replied…… waiting with baited breath….. “What if we see if he can qualify for the RSBP program?” – “I’m sorry, what is the RSBP program?” The ever familiar, give us a moment look came my way. So I did. I sat patiently while once again the “experts” at the table discussed. Again, more God-Forsaken Fucking acronyms….. then they told me, “Yes, we think we have an answer for your son.”
The RSBP program, I was told, is a RSP program (Resource Specialist Program is a special education program designed to help students with mild to moderate learning disabilities) that focuses on a child’s behavioral issues affecting their ability to learn. The “B” then standing for Behavioral. There was such a program, one of its kind, at another school in the district. It is a new program only having been around a couple of years but they are finding increasingly amazing results with the program. Steve would need to be assessed by the school psychologist and teacher of the program to see if he qualified. The school was on the opposite side of town and if he qualified, he could be bussed there or he could be driven by us.
Well because Steve’s story is long enough (and have I mentioned how much I HATE ACRONYMS?) I’ll spare you all the specific details but basically, Steve qualified and now attends this program. There is a whole chapter here that I’ll save for another post should someone need or want to hear it about after school care (especially at two different locations in the same day because THAT was fun, NOT).
Moving Steve to this specialized program was one of the single best decisions I have made as Steve’s mother.
So while it was decided that he would be assessed by the new school come fall we had another transition to get through, I call it, THE SUMMER OF HELL. This too shall be a separate post. But just know… IT WAS BAD. And because of THE SUMMER OF HELL…. I went back to our regional center and demanded that they reassess him because I KNEW there was something else wrong with my child. It wasn’t ONLY ADHD, as if that was not enough.
Finally, during THE SUMMER OF HELL, he was taken back to the regional center and in an assessment room with a developmental psychologist who in a matter of moments said, “I have no doubt that your son is on the spectrum.” I remember hearing those words as clear as day. She continued her assessment and we waited for the report to be written out.
The day had arrived. The report made a chime in my email. There it was…. was it going to have the words I prayed for over the course of the past two years…. please let it have the words. The report was multiple pages and very thorough but I didn’t see any of it…I went straight to the back where it said, Steve is autistic. It didn’t say Steve had autistic like tendencies. It didn’t say Steve had some autistic like characteristics. It said plain and simple. STEVE IS AUTISTIC.
THANK YOU GOD!!!!
This simple statement is what opened the flood gates.
Steve received at school, the placement in the behavioral program necessary for his success. It has a smaller class size and a teacher who is well versed and trained in ABA and autism in general. Steve continued with Speech Therapy for his conversational use of speech. He received Occupational Therapy for his proprioceptive needs and sensory diet.
With this diagnosis he also then qualified for services OUTSIDE of school. This happened right as the it became law that if a child has a diagnosis of autism, insurance MUST cover it. Again… Dumb luck. I didn’t know about the law. I didn’t know I wouldn’t have gotten services before. I didn’t know. Dumb Luck.
So I looked for a service provider. That too is a whole other story. I believe I did mention, a few times now, Steve’s road has been LONG. We finally found the right provider in AST (Autism Spectrum Therapies…. http://www.autismtherapies.com/ ) – again, we happened across them by DUMB LUCK. It just so happened that the woman in charge of autism services within the company I work for, went to college with the woman who founded, AST. Yep. Dumb Luck! The woman at my company made a phone call to the woman at AST and Wham… Steve was starting services a week later. DUMB LUCK.
We have now been doing intensive ABA with AST (Oh Lord… here I go using all those damned acronyms) for 2 straight years now. In fact…. today is our 2 year anniversary date. The world is a very different place for us now. The meltdowns, they still happen. Less frequently, less intensity. The aggression, it still happens every ONCE in a while. The learning…. WOW has the learning gotten better. I’ve learned so very much over the course of this journey and yet still… I have such a small amount of knowledge about all of this.
So this is where we are. This has been the road of help for Steve. We’ve had a lot of DUMB LUCK… and a few “What If’s” that have helped us along the way… so now… I am here for others. This process has to be for a reason. I have to be able to help others. So if I can be of help to you, to someone you know, PLEASE… pass along my blog and let me help.