Some of you may have been following along with the ongoing life story of our 5 year-old son, Noah. My wife and I have blogged several times about the journey of the last 3 years.
The latest chapter in this book, however, is quite a surprise–dare I say–miraculous.
–But let’s back up…(beep, beep, beep…)
Noah was diagnosed on Halloween, (2005)–strangely, Christy’s favorite holiday. We were pretty shocked by the whole thing, but we also felt relieved to actually have a diagnoses for our son rather than just live in a state of perpetual wonder–trying to guess what is wrong with your child. Have you ever been there? It’s unsettling…and freaking stressful. So the diagnoses was actually just the thing to act as a launching pad for us. We now knew what we needed to do, or at least for WHAT to start looking–autism treatment.
We immediately contacted the city to inquire about services, but we were already planning on moving in a couple of months, so we were also at a tad of a stand still. We did some paperwork…made a few calls…but nothing really happened until March. So what did we do during those months where we had nothing? RESEARCH. My wife did most of it…reading, calling, reading, talking to people who had been through it all…and more reading. We finally found The LOVAAS Institute for Autism Research, and went to a group meeting of LA FEAT (Los Angeles Families for Effective Autism Treatment) to hear more about the program and speak with other parents that had experience with the program and “fighting the system”….and oh my gosh…we had no idea what we were in for…
That night changed our lives forever.
You see, city and state funded programs will usually pay for a small baseline amount of services for your child. There are a lot of kids affected by autism (and other conditions), and money doesn’t grow on trees (but evidently the government has some money trees stockpiled somewhere…about $700 billion worth…ah but I digress). So they will offer 10-15 hours of services per week, but the 40 years of autism research done by Lovaas tells us that kids with autism under the age of 5 that receive less than 30 hours of one-on-one ABA services per week will experience little to NO change in their condition by the time they turn 5. BUT, 50% of the kids that receive 30-40 hours of the same treatment per week will exhibit NO SIGNS OF AUTISM BY THE TIME THEY TURN 5.
We knew what we had to do.
We asked for more hours from the regional center. I think we asked for 40, knowing that we wouldn’t get that many…but you know…you have to bargain. We cited the research and nicely bargained (or one could say “threatened with a fair hearing”) to get 35 hours of therapy funded through the regional center. NOT BAD, we thought. At that point we also switched from a small agency to Lovaas. Lovaas is pretty stinking popular (and only in L.A., sorry world) so we couldn’t start the regular program at first. We had to start with their “Workshop Method”, meaning we had to hire OUR OWN therapists that the Lovaas Institute would train to do their method with Noah. There was hope to later change to the “Clinic Method”, and we took advantage of the opportunity to be in the Lovaas program at any rate, and did it. We are still thankful for those awesome APU college students (Psych majors) and the professor that hooked us up with them in order to get our program going. What a ginormous blessing.
(side note: spell check no longer puts a red line under “ginormous” as a misspelled word. God bless Will Ferrell…)
So when Noah turned 3 years-old and his services were now going to be funded by the local school district, we knew we had a hard road in front of us. The school district just wanted to throw him in a special ed. classroom. Now, there is nothing wrong with special ed classes–Christy’s dad taught one for 30+ years…and STILL volunteers at the school every once and a while in that class. But it is not an appropriate place for a child with autism–and more specifically–not for Noah. Noah imitates behaviors he sees, and if he were to be in a sp. ed. class, he would be imitating the inappropriate behaviors of the other children in that class. Many of whom would be suffering from disorders OTHER than autism.
So we called our friends from LA FEAT…they helped us through every step of the way…told us exactly what to do and say and what NOT to say. (BTW–you can’t say you “what what’s best for your child” because legally, the state is only required to provide what is fair and appropriate, not what is BEST. Read about it here.) So we fought for what was appropriate for Noah at that time—40 hours a week of the Lovaas one-on-one therapy.
We went all out. We hired a lawyer.
BEST. DECISION. EVER.
Didn’t even have to pay for it…the money gets paid BACK to you as part of the settlement if you win. And because we got the number one lawyer in southern California specializing in autism and special education cases, we won–35 hours–half funded by the school district and half funded by the regional center. We were ecstatic.
Noah made huge progress. We went back again the next year–hired our lawyer–fought, and won again. (I’ll spare you the ugly details).
NOW we get to Fall, 2008.
We moved to a new school district–one we had heard great things about–and had Noah’s IEP meeting (the meeting that determines his placement for the year) and we were all geared up to do this whole thing again. We had considered putting Noah in Kindergarten since he was just turning 5, but thought it might be good for him to go to preschool for one more year–a GENERAL ED preschool like the one he was in the previous year–but only a few days a week and with a Lovaas aide.
Then the miracle happened.
We went to the school district and they gave us everything we asked for.
No fight.
No lawyer.
No ugliness.
Just fair and appropriate placement for Noah.
No tricks or schemes.
We were FLABBERGASTED.
Before going to the meeting we talked with Lovaas and had determined that perhaps Kindergarten was the most appropriate place for Noah this year. He was academically more advanced than most of his peers, and needed the challenge that Kindergarten would bring. One catch–a GEN ED class is still the most appropriate place for Noah due to the fact that he imitates. And we wanted a Lovaas aide there to help…but the kicker is that we agreed to a fading program that would have Lovaas out of the classroom entirely by the end of the year…a BOLD move…but we feel it’s the right one.
So now, here’s the skivvy:
Monday morning, Noah started Kindergarten in a regular class–half day–with a Lovaas aide. He’ll be attending five days a week, and we’ll be slowly fading out the aide…and of course holding meetings to see how Noah is progressing in the class and all of that stuff…
I honestly couldn’t be more encouraged and excited about the future for Noah–and I know a lot of you (family and friends) have been praying for Noah for a long time, and more specifically for his first day of school…and it was great. He made some friends, did his homework last night, and seems to be fitting in to the class just perfectly. Of course, we’ll find out how it all goes over the long haul–but for right now, we are encouraged.
We are thankful.
We are amazed.
There was a lot of reason to lose hope over the last three years. There were a lot of trials and plenty of pain. We struggled, we fought, we didn’t always know what we were doing. But one thing we ALWAYS knew is that God Almighty had created Noah with His own handiwork, and has this precious little life in His mighty hands. There was never a question that God was in control–we knew there was no way any of this would happen without His guidance and direction. So we never lost hope.
I don’t know who all will ever read this…but if you happen to have a child with autism and are starting out on this journey…please, leave us a note. I would be happy to talk with ANYONE regarding this thing we have dealt with over the past few years…the only way we knew what to do is because we talked with other people who “knew the ropes”. So drop a line…we’ll chat.
For the rest of you–thank you for your prayers and support.
You’re awesome.
