The Uncomfortable Truth

I'm in a Yahoo! group for parents of special needs kids. It is a great group, made up only of parents—no professionals, teachers or anyone involved in providing services for special needs kids. The needs vary in type and severity, but the feedback on local providers, school districts and classrooms is invaluable.

But as with any group that is both varied and on the internet, the occasional heated debate arises. The most recent one erupted over a local event about raising siblings of special needs kids. The event is called "I'm Important Too" and the description includes this line: "Living with a child with special needs is tough on families, especially for typically developing siblings who may sometimes feel forgotten or less loved."

Well, this caused quite a bit of outrage. Sure, the group is intended for parents, but how would it feel if you were a child (or adult) with special needs and read that you were "tough to live with?" Not great, I'd guess.

I will speak only for my family now. The truth is that Moe is very tough to live with. He requires constant supervision, is self- injurious and aggressive toward others, including the dog and on occasion his little sister. I cannot count the number of times I've had to tell Jelly "in a minute, Moe needs me right now" or the things we cannot do because Moe's needs make it impossible. These include travel, playdates, eating out or going to the movies as a family, to name just a few. It is not his fault, but it is reality.

Jeff and I are stressed, stretched thin, on constant alert. We do a lot for Moe because we love him, but also because we have to. Make no mistake, we are not heroes in any way. We have no choice.

And it is hard.

I need, and have found, several safe places (including this blog) where I can say that. And as Jelly gets older, she is going to need several safe places to say that too. She is going to need to shout from the god-damn rooftops that living with Moe can be really really fucking hard. I'll even allow the swearing. Because it is, and no good will come from sugar coating that. She needs to know that she is heard too.

She also needs to know that we love Moe despite the fact that it is hard. We love him for who he is. His life has value and brings us great joy. But living with him can be difficult, and she is not a bad person for feeling that way, if she does indeed feel that way. Perhaps she won't.

News broke of another case of a mother who killed herself and her adult autistic child. These cases are heartbreaking. They also bring out the rage of a heartsick disability community, who blame the portrayal of autistic people as "hard to live with," as leading to a mindset that accepts these murders as okay. They believe that the parents and the media make these murders excusable by painting the act as somehow understandable or the autistic person's fault. It is neither, of course.

But I do not believe the answer is to hide the fact that autism can create a terrifying existence for some. I do believe that the media, lawmakers, families, insurance companies, policymakers and autistic self-advocates need to know that keeping these kids safe means keeping their families safe too. It means shouting loud and clear that for some living with an autistic family member can be hard, even near impossible. So impossible that some parents see no other option but death.

Because there is no safety net. Not for these kids and not for their parents.

Moe is almost seven years old, and he's a small kid. But he's strong and someday he'll be too strong for me to handle. We are working hard to help Moe get the communication skills to tell me why he's mad or frustrated. But if I'm no longer able to keep him safe, or his sister safe, or myself safe, what do we do?

Someday, for one reason or another, Moe will not be able to live with me and Jeff anymore. So tell me. Where will he go?

This is not a rhetorical question, one that I hope to have many years to figure out but one that nevertheless weighs on my mind and doesn't seem to have any good answers. But maybe, if I shout my pain as loud as I can, if I tell everyone that living with an autistic child can be really, really tough, someone might help build those safe places. So we all can be loved and cared for. Moe especially, but the rest of us too. We all have value.

So I say it again. I love Moe with everything I am. But living with him is really hard.

It may be uncomfortable to hear. But it has to be said.

Read also a related post I wrote last September: Making Positive Changes in the Wake of the Stapleton Tragedy

Possibilities

I sat on the couch in the mostly dark living room. Blue and green LEDs blinked, indicating our connection to the outside world.

Praying for sleep, I leaned into the couch cushions and closed my eyes, my foot still moving. Up and down, up and down, as I rocked a newborn Moe in his bouncy seat.

I tried to appreciate those moments, but I admit, in the exhaustion, I didn't always embrace the joys of motherhood.

Still, I remember his face. Chubby cheeks and milky smile on a perfectly bald head. His curls would take two years to appear.

On the last day of May, Moe turned six.  I haven't written a blog post since then. I've started many, adding to my ever growing drafts file. I've been busy, yes, but the truth is I can't seem to collect my thoughts enough to know what to say.

Six.

On that awful night a few weeks ago, when Moe screamed and screamed for hours on end, there was a brief moment of calm. Moe was in his room and Jeff was in bed. I went to the living room and sat on the couch. The same couch where I spent hours bouncing Moe. Studying his face. Learning what it meant to be a mother.

Dreaming about his future.

The memory of that time came rushing at me with such force, it was if I had simply dozed off for a moment, these last six years a strange dream that I'd forget once the day began.

For a moment I wished it were so. I allowed myself the indulgence of going back to a time when Moe wasn't struggling. When all the milestones were ahead of him. When I could dream of my future architect or doctor, imagine my feigned horror when he told me he wanted to go to Stanford instead of Cal. When I could wonder what his first words would be. When anything was possible.

The moment passed, and it is just as well. Such indulgences serve no purpose, add no measure of happiness to our lives. Maybe even the opposite.

Moe is six years old. He woke on his birthday with a smile and I gave him cake for breakfast.

He ate the whipped cream off the top and I told him anything was possible.

No Crystal Ball

If you read my post over at Silicon Valley Mamas, you'll know that I was on a quest to buy a LoveSac for Moe. Every time I say it, I can't really understand why you would name your store something that sounds...well, you know how it sounds. I did buy one, the KidSac (doesn't sound any better, does it?). Their packaging is covered with "lovesac.com is not a dirty website." It's all very tongue in cheek, including their slogan "It's not a damn bean bag." I'm all for creative marketing, but I think maybe a name change would do wonders for their image. But I digress. The point is, I went to the mall today.

As I sat down with Jelly for an early lunch, I looked around the food court and noticed a group of teenagers and young adults with various disabilities. I see similar groups at the mall often; local groups learning independent living skills. Their impairments are severe. I don't know if any have autism, and if so, these would be the ones considered on the "low functioning" end of the spectrum. Still, I couldn't help but imagine Moe in the future, learning to order french fries, pay and collect change. I know that for some people, being able to shop independently is a huge accomplishment, and I don't mean to take anything away from people who work really hard to get there. But I want more for Moe.

A little while later, a friend of mine posted a Facebook status update with a video of her 6 year old son, G. He went to her Mac and independently made a video of himself singing and signing a phonics alphabet. G has autism and two years ago he had almost no language. Today, he's making videos of himself on the computer. It was just what I needed to see. I can imagine a future where anything is possible.

I used to wish I had a crystal ball to know which way we were headed with Moe. When he was first diagnosed, I longed desperately for a brief glimpse into the future. Will he talk? Will he graduate from college? Get married? But of course there is no crystal ball, so I'm working hard to believe only the best. What would be the point in thinking otherwise? This is what it means to take things one day at a time. We will work hard but what will be, will be. Moe will be the best Moe he can be, and I will burst with pride at his every accomplishment.

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.

Proof

A New Adventure

I took a baby sign language class with Moe when he was a baby. He kind of got "more" but it never really clicked with him and I didn't keep it up. Now I understand that he wasn't really understanding language in general. But with such a strong focus in our house on language, and developing communicative intent, I wanted to start signing again with both kids. I had heard great things about Signing Time, which was formerly on PBS, so I started by getting a Baby Signing Time video. I couldn't believe it when Jelly Belly, all on her own, signed "milk." Now I sign with her all of the time and she has three signs: more, milk, and all done. I think she may also understand dog, mommy and daddy.

We sign a lot with Moe as well, and he will very rarely use signs. When he does he generally will also say the word while he signs. He loves the ST videos and he cries when the ending credits come on. We watch them a lot.

So the timing couldn't have been better when I saw an announcement in the Signing Time newsletter. I've been looking for something to do: some kind of job or hobby to keep my mind working and sanity intact while at home. Blogging has been a great outlet, but it isn't always enough. Immediately, something clicked. Now this was something I could really do!

I researched the requirements for becoming an instructor: one or two American Sign Language (ASL) classes depending on the level of certification you are going for. I decided to take a class online; if I liked it, I could move forward. If not, I would move on. I loved it and took a second class. I'm considering taking a third. But I still couldn't decide if I wanted to actually teach a class. I would be an Independent Contractor authorized to teach the ST material. It would mean starting a (very) small business, including finding locations to teach, charging tuition, and competing with other local baby signing classes.

Finally, this weekend, I took the plunge. I filled out my application, sent in my resume and a lovely letter of recommendation written by my BFF. I decided to go for the first level of certification, which will let me teach to kids three and under with their parents, as well as do parent workshops. In the future, I can upgrade to be an Advanced Instructor, allowing me to teach older kids, as well as professionals, like doctors or teachers who may want to use ASL in their practices. I have a phone interview today and my training materials and curriculum are on the way.

It will still be a little while before I will actually start teaching classes. After I get certified, I'll need to wait until Moe starts school and I know his schedule. I'll have to find childcare for Jelly Belly while I teach. And then I'll have to set up the classes. But a new adventure has begun!

If you aren't familiar with Signing Time, you should definitely check them out, especially if you have young kids under three, and even more especially if you have young kids who aren't yet talking. In future posts, I'll talk more about what ST is all about. I'll also talk about the benefits of signing with kids and how using sign language affects development of speech in hearing babies.

Everything I needed to know I learned on Desperate Housewives

I've been feeling like I should write something for the new year. I should have some resolutions, or at least hopes for the year to come. I usually like the idea of a clean start for the new year, however symbolic. But this year, I woke up on January 1 feeling much the same as I did the day before: facing many more days of much the same, with no real sense of where we're headed. Maybe it had to do with the fact that I stayed up way too late and the kids had the nerve to want breakfast at 7am. Let's just say I wasn't feeling a renewed spirit for the new year.

Thank god for Desperate Housewives, which has given me inspiration for the new year and basically written this post for me.

Do you watch it? I know you do. But in case you didn't realize it was back on after the holiday break and forgot to set your DVR, this week was the episode where we learn what happened after a small plane crased on Wisteria Lane. The epsiode was a collection of everyone's dreams about the future if they had or hadn't made certain choices. I generally don't like this "what if?" kind of show. But this time, one of the scenarios struck a nerve with me.

Lynette, who is pregnant with twins, learns that one of the babies might be born with a disability. She is rushed to surgery. But in Lynette's dream, she imagines what life with a child with a disabilty would be like. I cringed. So often these shows get this kind of thing so, so wrong. But I have to say, from my very limited point of view, they got things pretty right.

The dynamic between Lynette and her husband, Tom was very similar to ours. He's pretty calm; she's looks exhausted. He's optimistic, while she's worried. I tend to focus on what isn't happening yet, or what isn't going well. In one scene, during a difficult therapy session, Lynette frets "He should be sitting by now, or pulling up to stand or crawling." The therapist tells her that if she worries too much about "what he should be able to do by now or what other kids his age are doing, it is going to drive you crazy." This is true for all parents, but even more so for those of us with kids who are delayed. I am always looking at where Moe should be compared to his age group. And even though I already know he's dealyed, I feel bad when I see it in some particular situation. So, resolution #1: Moe is on his own path. Get over it. Celebrate his accomplishments and stop driving myself crazy worrying about a future I cannot predict.

Lynette breaks down and her conversation with Tom goes something like this. I think the writers at ABC must have microphones in my house, because I have had this conversation:

Lynette: I can't do this
Tom: Can't do what?
Lynette: This. Her. The therapy... And no one can even tell us if any of it is helping.
Tom: I think it is. And if it isn't? This is what there is to do. So we're doing it.
Lynette: Well, I can't
Tom: No. You don't want to. Neither do I. Neither does he.... But we don't have a choice.
Lynette: I feel like I'm being punished and I don't even know what I did.
Tom: You can't think that way.
Lynette: What else is there to think about? Hopes for the future? He might not even have one.
Tom: He's 14 months! Don't write him off yet. But you should start thinking about the future. Because no matter what, it's coming, and it is either going to make you less afraid or more. And you will know that you either did everything that you can for your son or you will be sorry.
Resolution #2: Stop feeling sorry for myself. There is no giving up so get over it. Know that we are doing everything we can for Moe. Do everything in my power to make sure that keeps happening as we have our first IEP this year. Do or do not. There is no try.

(Okay, that last one was from Yoda, but it just felt right.)

Fast forward and the son goes on to graduate from law school. In his graduation speech, he recognizes that his mom pushed him hard. She was scared, not of his disability but of "my potential and that she'd miss something that would help me reach it." Resolution #3: Stop being afraid of autism. Fear will not change the future. Do not give up hope that anything is possible. If we work hard, Moe will reach his greatest potential, which is all a mother can ask for. (And a phone call once in a while. And maybe some grandkids. Oy.)

Oh, and all of the above goes for you too, Jelly Belly.

Deep breath

I've been working on a post for several days now, the gist of which is this: as someone who has experienced great personal loss, I should be more thankful that Moe is healthy and happy. But even though I know that, I can't help but feel sad for what Moe's future may hold, and that just being alive and well isn't enough. I want him to have everything.

Then on Friday night, Moe woke up crying, struggling for breath. He was wheezing and as I held him I could feel his chest pulling in deep as he tried to take in air. Jeff took Moe to the emergency room, where they gave him a steroid and had him breathe in a fine mist. He is fine - just a case of croup.

But what a wake up call! I've been feeling so down lately, worried about all of the bumps in the road ahead. Of course, I still want Moe to have everything, and it is hard to know that things may not go as smoothly for him as for other kids. But he's going to be just fine. Now that he is breathing easier, I am too.