Things Change. Things Stay the Same.

It's been hard for me to write lately. I'm tired, working full time. And since I work as a writer, even though my daily writing is very different (should the button say "cancel" or "continue?"), that piece of my brain, the piece that makes me need to move my fingers around a keyboard, is tired at the end of the day. And then there are kids to put to bed and dinner to make and chores to finish. And also Orange is the New Black.

But those are all excuses. You know it and I know it. The truth is I haven't wanted to write. It's been too hard. Too hard to find the energy to hash it all out. It's so much easier to block it out for a few minutes with a glass of wine or the latest episode. Or both.

Moe turned 8 in May. And while I've long given up on the comparisons and the what would he be doings, each birthday is one step closer to the rest of his life and all there is to worry about. The Future. About no good options for housing and care and what are we going to do when we aren't here anymore. I woke up in tears one day wondering who will make Moe his favorite foods when I'm gone. It's a silly thing. Except it's not.

And then, because it was June and the end of the school year, we once again began the IEP dance with our school district. They do the assessments. We observe sessions. We craft goals. We talk to some very well meaning people and some not so well meaning and they offer us the same thing they offer us every year. A bundle of services in a classroom that is totally inappropriate with a staff that is woefully unable to handle a kid like Moe.

So we continue to do what we've been doing. And hoping it's the right thing. And not sure how to proceed if it's not.

And along with all of that, the aggression and self-injury has returned. Moe hit his head so hard on the dining room table that his entire forehead swelled up. And then, as the swelling drained, his eyes turned black and blue. With newly missing top teeth (even the most special kids can't escape some of the normalcies of childhood), he looked like a prizefighter. A cute, eight year old boxer in striped pajamas.

We went through the gamut of reasons. Pain? Teeth bothering him? Sick? We took him to the dentist just in case. He was messing with his ears a little. Ear infection? Just unhappy? Needing sensory input? Too much input? And how we want to help him, and how we want to stop being scratched, grabbed, attacked by our boy. And the whining and needing but never knowing what. Food? TV? iPad? Sorry kid, you broke it. Bit and cracked the screen - right through the case.

His doctor increased his medication. We waited a few days to get some baseline data. And then we started. Just a small increase. And things got better. Just like that. It's only been a few days and I'm trying to enjoy how sweet he's been. Affectionate and wanting to sit with me. And he's better at communicating. I'm trying to remember not to flinch when he turns quickly toward me. Trying to enjoy the silence and have a little more patience with Jelly. Trying to push out the fears of what if this dose isn't enough? We can't just increase it forever. Right now it's enough. Breathe.

There were good things this summer too. Jelly turned 6 in April and then finished kindergarten. I took her back east for a week to meet all the cousins. She got to run and play and not have every day determined by Moe's mood or needs. It was important for me too. I have good cousins and aunts and uncles I don't get to see very often.

This week starts the next chapter for us. After a few months off to take care of Moe, Jeff goes back to work tomorrow. That was a big deal I haven't talked about here. Maybe another time. Our new nanny has her first solo week with Moe. She survived a rough first week, but I hope next week will be better. Jelly has one more week of camp before she's off for the summer. And I'll keep on working, and writing when I can.

Many Moving Parts (AKA Life is Complicated)

As I've mentioned before, Jelly starts kindergarten next year. And while I expected it to be easy to find a school for her, it isn't. Our options are:

1. Send her to our local public school, which we're not thrilled with.
2. Send her to the public charter school, which we're going to see tomorrow, but will likely have it's own issues.
3. Send her to private school.

But it's even more complicated than that. We also trying to move, and we have to figure out Moe's school.

We'd love to move into a better district for both kids. But a better district means more expensive houses, and a very competitive housing market. We might find a house we like in a district we like but still get outbid. Most houses here get many offers, go well over asking price, and are usually all cash, no contingency offers.

We did find a private school that we really like for Jelly. But they have very few open spots so there is a possibility she will not get in. (Though who wouldn't want her? Seriously.) And it is a bit farther than we'd like, although it is on my way to work. If she gets in, we could move closer. But if we moved closer, we'd also be in a better school district, which means we just dropped a lot of money on a new house and we might not need private school. Or we still might not like the public school, which would be a very expensive and disruptive option.

We could stay in our current house, which has the distinct advantage of being the house we live in right now. The house is small and we really could use more space. But it is a nice house and basically Moe-proofed. If we stay, the schools aren't great for either kid. We know the program isn't appropriate for Moe, but if we do decide to fight for a non-public placement, at least it is the devil we know. If we move, we will be starting over, for better or worse. The programs could be better for him, but we really only know their reputations. You don't really know until you get there.

I'm also commuting and our goal has been all along to move farther north, which would make my commute shorter, and Jeff's longer—but he'd be going against traffic. But then, we're back in the better schools means more expensive houses, means... You get the idea.

As I said: it's complicated.

2013 Update

Oh, twenty thirteen, it's been quite a year so far. Time flies when you're busy, even if you're not always having fun.

I'm coming down from a few busy months, starting with my birthday weekend in San Francisco, followed by my trip to San Diego with Jelly, then her birthday, and peaking on Mother's Day with Listen to Your Mother. It all came to an exciting conclusion last Friday when I had all four of my wisdom teeth pulled.

At the beginning of the year, it all seemed so far away, and now here we are. One more month and the year will be half over.

This time last year, we were right in the middle of some nasty IEP meetings. And although that was a very tense time, and meant a significant change for both of us, I will never regret pulling Moe from school.

That decision doesn't exempt us from IEP season, however. Because this year would be Moe's third since he started school, he was due for his triennial assessment. For those of you who don't know, while a new Individual Education Plan (IEP) is written every year, a full assessment is generally done every three years. Moe's first with the district was when he left early intervention, funded by the regional center, and entered our district's autism preschool special day class.

The assessment started last week, and involves several standardized tests, questionnaires for me, an OT assessment and some observations. We know the people doing the assessments. They are kind and smart, though seeing them again has brought up some pretty strong feelings.

At the end of the assessment, we will have an IEP meeting. The district will set goals and make some offer of services. We still feel pretty strongly that a classroom environment is not appropriate for Moe right now, but we do want him to return to school eventually, so we continue to go through the process.

Moe turns six next week. We won't have a party, but we will have cake. I will try to make it a special day for him. I am trying not to think about what might have been. How, in another version of our life, he might be finishing up kindergarten. That we would be planning summer vacation and choosing a camp.

Instead, I will continue putting one foot in front of the other, and start thinking about what the second half of the year may bring.

Measurable Progress

Someday I will share the full story of how and why we pulled Moe from school. For now, it is enough to know that he was not progressing there. What started as a desire to secure additional extended school year services (for summer and other breaks) turned into a full independent evaluation done by a very well respected child psychologist on our dime. She observed Moe in class on two separate occasions, and it was her professional opinion that the school district's preschool program was not appropriate.

Moe has been doing an in-home ABA program since June. He receives about 20 hours a week of in-home behavior therapy as well as an hour a week of speech. In the beginning, the difference was remarkable. While the school tried to convince us that Moe wasn't meeting goals because of his "rate of learning," Moe mastered his programs at home quickly. The school and our ABA provider use the same program so the comparison was easy.

Jeff and I have been thinking a lot about where we want Moe to be next year. Should we continue with a home program? Get him back into school? And if school, which one? We know the district's program is simply not appropriate for Moe, and there are several non public schools in the area. Last year, I visited seven of them, and there are two or three that might be appropriate, though they all have serious trade-offs. We will need legal action to get Moe in one, and we need to be sure the one we choose is the right fit.

I've also been questioning a little whether his home program continues to be effective. Moe is bored at home sometimes. The program is highly scaffolded, meaning that program progresses in small, incremental steps. While his early progress was remarkable, it can be hard for me to see the progress when the steps are so close together. For example, to Moe one sorting task probably looks a lot like another, even though we've added more items or distractors to make the task more challenging.

In order to help us answer these questions, I took Moe to see the same psychologist who evaluated Moe last year. Dr B met us in the waiting room, looked at Moe, who waved to her. She said "such a difference from last year. I can see it already."

I was nervous as we went to her office. Moe can be aggressive and non-compliant and frustrates easily. I really wanted her to see him at his best. This assessment isn't about qualifying for services, it is about making the best decision for Moe. I wanted her to get an accurate picture of Moe's skills.

He did great. By that I mean, he did his best, with no behaviors to get in the way. He showed what he could do and where he still struggled. He sorted. He matched. He imitated and approximated words and blew bubbles. He had trouble with a few areas I know he knows (like pointing to body parts), but Dr B will be here Thursday to see him in a ABA session as well.

This was the first assessment I can remember leaving with a smile on my face. I did not fall apart in the car on the way home. Moe has made progress.

Moe is still severely delayed. He's probably at a 2 year old level or younger for many things. But he's doing better. He's learning. As we were packing up to leave, Dr B said to me  "It is nice to see him learning things and not just pushing toys around in shaving cream."

And in that moment, I knew that we made the right decision to pull Moe from school. I know his progress this year has been real and significant. I still don't know what we are going to do next year. But I do know we were not being unreasonable to demand better for him, that his lack of progress wasn't because of his learning, but because of how he was being taught.

Lessons Learned

You looked them in the eye, or maybe stared at your hands, and you said the words. "Yes. He will make progress here next year."

You lied, or maybe you just don't know any better. Either way, you all echoed those carefully crafted words so that you would have them on record. But none of that changes anything.

You have failed my son. And now it is time to move on.

I know you want to be able to help him. I wanted the same. I put my trust and faith in you. I gave you my son. I put his future, his entire life, in your hands. And it wasn't enough. For two years you had your chance.

At first I didn't blame you. But then we looked a little harder. We witnessed it all. We could see it wasn't right. I'm sorry--wasn't "appropriate." I can use the right words too, you know.

And we have seen what he can do when it is.

We have wasted too much time already.

It is a shame. I know many of you have the best intentions. You took the job because you wanted to help. You probably didn't know about all the bureaucracy. How you would be discouraged to do the right things. I can only imagine it. Who was it who told you "don't offer anything unless the parents ask for it first?" Who told you to find a way to show progress even when there isn't much to show? To blame him rather than take responsibility?

And now my son's education has come down to a financial decision. To legal bickering.

Do not forget there is a little boy involved.

Do not forget the time you sat around a table and made promises you knew you couldn't keep.

Do not forget the face of a child whose mother will not fail him. Even if the system did.

It's a shame.

Back to school and dreaming big

The alarm went off at 7:00 this morning and my heart skipped a beat. Today is Moe’s first day back to school!

Many of the kids in Moe’s old playgroup will be starting preschool this year. I’m looking forward to seeing the pictures of them in their new school clothes, backpacks on and lunch boxes in hand. For Moe, this is old hat. He’s been going to school off and on for over a year now. Although there were some tears at drop off today, as soon as he saw his old classroom, he was all smiles. His teachers greeted him with big hugs.

This is a really important year for Moe. Last year was a really important year too, and it didn’t go as well as I had hoped. It took a few months for us to find the right program. And when we did finally get him the right type of therapy, I had such high hopes for the progress he would make. I imagined that at the end of a year, he would be connecting, talking, communicating. Maybe he’d still have some social issues, difficulty with play and imitation, but he’d be getting back on track. Moe did make progress, but quite honestly he’s not where I wanted him to be. I don’t think we made any mistakes, and there are only a few things I might have done differently (knowing what I know now), but developmentally, he just wasn’t ready to do what I hoped he would be doing, especially in language development.

So here we are. Moe is three and not talking, though lately it seems as if he may be trying again. He’s back in our public school’s preschool autism program, which he attended for just a total of 6 weeks at the end of last year and during the extended school year. Today, we’re starting fresh with a great program and wonderful teacher and again I have such high hopes. I’m afraid to wish for too much so I’m not disappointed – no, heartbroken – again. Jeff reminds me that we have to hope for it all, because what else would we do? Hope for less? If there is one thing I’ve learned, it is to never set the bar too low.

At work, we would always set some stretch goals for a project. These were the tasks we hoped to achieve, but that were probably slightly out of reach. In the striving for them, however, we probably accomplished more than we would have without them. So this year, I will let my hopes and dreams for Moe stretch as far as as I can imagine.

Our First IEP

Yesterday was our first IEP meeting. Overall, it went well, and everyone seems to be on the same page with Moe's strengths and areas of need. The meeting started with a discussion of the assessment report and the draft goals. We had received the report and draft goals beforehand, and I had reviewed them with our trusted SLP so we were ready to go right away. There were 14 goals, in areas from expressive and receptive communication to pre-academic skills.

Things started off a little funny. We were confused about the first two goals, and spent a lot of time discussing them. I think the group from the school was a little taken aback, and I think they were bracing themselves for a rough meeting. But once we got past those two goals, we had very little to say about the remainder. We changed the wording on a few, made some more aggressive and split out some goals into two parts to make them clearer. But overall, they were spot-on and picked up where our IFSP goals left off.

Then we talked about services, which is what we were anxious to discuss. This school is actually pretty incredible, offering a number of different special ed preschool programs right on one campus. The goal (and the law) is that your child receive Free and Appropriate Public Education (FAPE), and be placed in the Least Restrictive Environment (LRE). For example, maybe your child does fine in school, but needs some sensory breaks. Your IEP could be that your child is in a general education mainstream classroom (LRE) but is allowed extra breaks or fidget toys. Slightly more restrictive might be a mainstream classroom but with full time support and an hour of pull-out speech, for example.

This school offers programs for kids with cognitive disabilities (not Moe) and 2 and 3 half-day classes for kids with speech delays and/or social and pragmatic delays. They also offer a five day, full day, ABA-based preschool program. This is their most restrictive program and is reserved only for the kids who really need it. Unfortunately, Moe is one of them.

That said, we are lucky that such a program exists here. It is based on the Competent Learner Model, which I need to learn more about. Each child is tracked very closely and gets a daily report from the teachers. Speech therapists and occupational therapists "push in" to the classes. Moe will also get two "pull out" speech therapy sessions a week, one solo and one with a peer. There are only six kids in the class right now, and they are supported by one head teacher and two or more aids in the classroom as needed. The ratio is generally 2:1, though sometimes better, but not guaranteed. Being in a special ed classroom with an experienced teacher should be good for Moe. They will use visual schedules and picture exchanges and be familiar with processing delays and other characteristics of kids with autism. The goal of course would be to get him to one of the less restrictive classrooms in future years, but for now, getting him as many services as possible is the right thing to do.

We have two concerns. First is that the kids in this class do not have a lot of interaction with typical peers. They share recess with a typical class one day a week. Moe is just starting to notice what other kids are doing, so this could be an issue down the road. Our bigger concern, however, is the ratio. All of our therapists and our developmental pediatrician, Dr. S, recommended a 1:1 ratio to make sure Moe has adequate support. In this type of classroom with experienced staff, it might be okay, but we're not sure if we should push for more or what exactly to push for. Currently, he's not getting any specific behavior therapies, and we were assured that that is something we could add in as behaviors arise (we don't know what those might be since he hasn't started yet).

We haven't signed yet. We need to get the final version with our changes. We're also reviewing the plan with Dr. S to get her opinion and I need to circle back with our team to see what they think. We're going to observe the class next week and I think that will give us the best sense of whether we really need to push for the extra support for Moe.

Finally, Moe did qualify for Extended School Year (summer) session, so he can start right after his birthday. He'll have about 10 days of classes, then a week long break before summer session. Summer is a slightly shorter day and is only a month. Then there is a month break, so we'll probably continue our ABA through our current provider during the summer (with fewer hours) just to keep things moving along.

May is the Month for Meetings

As I expected it would be, this month has been filled with meetings. We have just one more big meeting (hopefully) coming up on the 20th, and the others have really been preparation for that.

This week, we had Moe's annual Individualized Family Service Plan (IFSP), which also served as his official exist from Early Start services. This is the meeting where we discussed the results of his latest assessments, reviewed our team's recommendations for ongoing services and discussed the transition to the school district. He will continue to receive services through his birthday, but the day after memorial day, he's cut off from his current set of services. I'm jumping for joy and trembling with fear at the same time.

As I've discussed before, it is tough to quantify a kid's level of ability based on standardized tests, especially when you're dealing with an autistic kid who may or may not feel like performing for you on any given day. So I'm trying hard to take the results with a grain of salt. That said, our team, especially our SLP and OT who see Moe every week, know him well. Their written reports are pretty accurate views of where he is now, and have given the school district (in addition to their own assessments) a good picture of where he is. In a future post, I'll try to paint that picture here.

On May 20, we have our Individualized Education Plan (IEP), which will spell out the services provided to us by the school district. That document, and the goals within it, is our contract with the school and is critical to how we move forward with Moe. All parties, including us, have to agree on what is in it, and it isn't binding until signed. Unfortunately, this can become quite a contentious process, often involving advocates and/or lawyers. So far, however, our school district has been very responsive and thorough in their evaluations. The psychologist has spent five hours with Moe, including one parent interview, two assessments and two ABA observations. Although she hasn't given me any details of their proposed plan, she indicated to me this week that her assessment of Moe is very much in line with what she read in the IFSP, as well as Dr S's latest report.

Incidentally, Moe also qualified for ongoing regional center services. They no longer provide the ABA or speech services, but do offer some assistance with things like respite care, day care, diapers after the age of 5 (Lord help me if Moe is still in diapers at 5), and behavioral consultation for specific problems that may come up over time. I hope we never have to use them.

One, Two, Three

Time is really beginning to fly around here. Jelly Belly turned 11 months old today, and I can hardly believe she'll be one in a month. One month after that, Moe will turn 3.

Moe's third birthday is a big deal. For one thing, it means that it will be one year since his diagnosis. It will certainly be a time for reflection on our journey through early intervention, how far we've come, and where we are headed. In more concrete terms, it means Moe ages out of Early Start services through the Regional Center (RC), and we'll have some decisions to make.

In California, once a child turns three many services become the responsibility of the school districts (SD) to provide. In April, he'll have his exit assessments from his current service providers and his entrance assessments for the school district. His new services will begin June 1.

In our district, which has a good reputation for special education services, all of the preschool classes are at one campus nearby. Once we know which class he'll qualify for (and I'm sure he'll qualify, at the very least under speech & language delays), we'll go observe a class. The change from RC to SD is a tricky one, because the SD only needs to provide services that will affect him from an educational perspective, whereas the RC is family focused, and responsible for the development of the whole child.

If we don't like what we see from the SD, or don't think it is enough, we of course have the option to find services privately. We can then pay out of pocket or try to get insurance reimbursement. (The latter is going to be difficult with our current insurance, but we're hopeful that new regulations under health care reform are going to force more insurance companies to cover autism services.) To that end, I've been researching our options for private preschools with autism programs. We're going to visit one on Wednesday.

The decision to send Moe to a special school would be tough. Not only will it be expensive, but I was really hoping he would be ready to go to a regular preschool, perhaps with an aide. But he is clearly not ready for that. I'm concerned he could get lost in the public program if he doesn't have one on one attention. He may learn to go with the flow, but I want to make sure we're bringing out all of his potential. These years leading up to kindergarten are crucial.

My best guess right now is that he'll go to the local preschool, hopefully 4-5 half days a week. He'll probably also get some speech services through the district. Then we'll likely supplement with social groups and possibly some additional one on one therapy, including some kind of ABA, extra speech and maybe OT. Our long term goal, of course, is that he's in a regular school (public or private) with typical kids, but we'll do whatever we need to do, one step at a time.

Photo by Zsuzsanna Kilian.