10 Reasons That Autism Sucks

1. Second-guessing. A few weeks ago, Lively learned an adorable new trick from his big sister. When we sing "Ring around the Rosie" a HUGE smile comes over his face, and he slowly walks in a circle, to the beat of the song, and at the part that goes, "We all fall down!" he falls down. He even says, "Dun!" I was thrilled to see this because I don't always know that he understands much of what I'm saying to him. Now at least I know that he anticipates the words to the song and maybe even has a clue as to what "down" means.

Now that he has the autism diagnosis though, I second-guess everything he does. Is he spinning because he's playing a fun game, or because he has autism and spinning is a repetitive stimmy thing? His therapists tell us we should try to stop him when he's doing a repetitive behavior and redirect him to something else, but I don't know what this behavior is! All little kids spin around, right? So is Lively's spinning a normal little kid thing, or an autistic thing?

2. Is autism the wrong diagnosis? In my last post I talked about Lively freaking out in the grocery store recently, crying, overwhelmed, terrified. And during that episode, all I could think was, this is it. My baby has autism. But all kids freak out in grocery stores once in awhile, right? So was it just a bad day, or was is autism?

A few days later, Pete and I took Annie and Lively to the mall. Our house is for sale, so when there is a showing, we have to leave for an hour or two. For this trip, Lively looked like this:

And the mall was crazy! It was full of large groups of roaming teenagers, one store blasted music so loud that I could feel the floor outside vibrating, Annie ran around screaming her head off, weird lights made pictures on the floor, the Easter Bunny was there, and Lively was FINE. He chased his sister around, laughing delightedly. He got frustrated when I tried to make him try on new shoes in a nice quiet little store, and happily ran out into the chaos. And Pete and I thought, he isn't autistic.

The next day, we took Lively to Lowe's, and he looked like this:



I can almost convince myself that there isn't a problem here.

3. Is autism the right diagnosis? Lively has had a gastrointestinal bug the last few days and hasn't been able to hold down any food. He has a runny nose too, and seems not to feel well. Last night we walked over to our new house, and instead of happily frolicking in the back yard (which is a beautiful fenced-in yard, and I have been dreaming about seeing my kids chasing one another in it), he cried so hard when I picked him up that I eventually set him down in the grass and let him rock and do this finger-flicking thing he's just started to do. My heart broke into a thousand pieces.

4. I feel enormous self-imposed pressure to quit my job and devote myself full-time to doing therapeutic activities with Lively to help his development.

5. The problem with number 4? Therapy is incredibly expensive. My 21-month-old has around 10 words that he uses so irregularly that I'm not sure we should really even say he has 10 words.  He needs speech therapy. But the fine print in our health insurance policy reads that although we are entitled to 60 visits of PT, OT, and speech per year, if Lively is eligible for free services, such as those in the public school system, insurance may decline to pay for additional services. Lively gets about 25 minutes of speech a week through Early On, but I haven't been impressed at all that it has made any difference for him. He needs more. A speech therapist who recently evaluated him recommended at least 2 hours of additional speech per week, and this, if we need to pay out-of-pocket, will cost around $1200 a month. And that's just speech. What if I want to take him to music therapy (which has been shown to be helpful with some autistic children)? Another $100 a month. The local pediatrician who specializes in autism and comes highly recommended, but doesn't take insurance? $300-$500 a month. The herbal supplements and millions of other products the internet recommends? $300 a month at least. So actually, instead of cutting back, perhaps I should pick up a second job.

6. When I do come home from work, I'm so exhausted both from work-related pressures as well as the underlying stress that comes from worrying about Lively 24/7, that my fuse is short and I'm not the positive, patient, therapeutic-play providing parent that I want to be. It takes all of our energy to get dinner on the table, to bathe a kid or two, give Lively his medicines and set up his tube feeds, read him a story, watch a Phineas and Ferb with Annie, read her a story, and get them both in bed. And then it's 9 o'clock. Which is when Pete and I crawl into bed and both fall asleep in the middle of a conversation about how I'm so worried about Lively.

Despite my neglect, the movie star seems to be taking things in stride.

7. The internet. I frequently tell my patients not to believe everything they read online. But there is so much conflicting information out there, I just don't know what to do. Do I experiment with a gluten free casein free diet? Am I the worst mother in the world if I don't try this? Do I vaccinate him when it comes time for his next round of shots? I have always believed whole-heartedly in vaccinations, and if I decided not to continue to vaccinate him, I think I might worry just as much about his risk of measles or rubella. Do I try the million-dollar vitamin supplements? Or the transdermal glutathione cream? I am actually thinking of a trial of the GFCG diet, although I'm not sure how to start because Lively requires about 750 ml of formula in his tube feeds every night, and finding a replacement for that seems almost impossible.

So far when it has come to Lively's health, we have had tons of questions his doctors can't answer. Pete and I have tried various methods to get him to take food by mouth based on things I've read in mom-blogs. And some of them have worked. But seriously, my son won't even eat non-pureed food, so how in the hell am I going to get 1400 calories a day in him if I can't even use his formula to make up the difference anymore?

8. Did I mention, um, the guilt?

9. The unknown. Lively is interactive, loving, happy, cuddly, and engaged. Will he continue to be this way, or will I wake up one morning and no longer see my sweet baby's personality in his eyes? Will he be able to have a job one day, or do we need to start thinking about providing for him forever? Should I hope for better treatments and therapies, or just accept that he will always struggle with this diagnosis?

10. I am neglecting the rest of my family. And myself. I need to go to the dentist. I need a haircut. I need to exercise. I need to cook a healthy meal for my family. I need to have a conversation with my husband about his day without being interrupted by kids or being too tired to listen. I need to be able to focus on Annie. I need to be able to provide a more therapeutic environment for Lively. I need a vacation (and for everything to be perfect when I get back).

Fortunately, for now, despite the suckiness of autism, I still come home to this guy every day. Seeing him and Annie and Pete when I walk in the door is the best moment of my day. You can probably understand why.





Autism Awareness Month

As my recent posts suggest, I have been more acutely aware of autism in the last few months than I ever have been before. It's a much-feared diagnosis for all parents, I suspect. Since the first instant that it was suggested to me that Lively may have some autistic features, I have been trying to find a way to prove that it's not true, that the developmental delays he has, the flapping, wheel-spinning, hand-twisting, and head-shaking can be explained by his stroke, his history of infantile spasms, anything else. Each time he looks me in the eye, checks in visually with me while playing, happily approaches another person, or waves bye-bye, I put a mental check mark in the "not autism" column in my mind. 

For the last 2 days, Pete and I have participated in a study at U of M: the First Words Project. Yesterday we had a 4 hour interview with a very nice psychologist specializing in autism diagnosis, and today Lively underwent 3 hours of testing, including the ADOS (Autism Diagnosis Observation Schedule) and a different test that assesses his cognitive development. Last month the developmental pediatrics specialist we saw diagnosed Lively with Pervasive Developmental Disorder, Not Otherwise Specified. Today Lively was diagnosed with autism.

I was expecting the spectrum diagnosis (PDD), but I was still hoping not to get the autism label. Lots of people don't know what PDD is. It sounds benign, or like a catch-all (we don't really know what's wrong with you, so we'll call you PDD!) It leaves hope that my son may one day not meet criteria for an ASD. Autism comes with preconceived notions. It's a label no one wants, that most people pray to avoid at all costs.

Yesterday I got a big dose of mothering an autistic child. I took Lively for a quick trip to the grocery store with me, which is something we've done quite a few times, although not as much as I had with Annie at his age because we've struggled with physical illness with Lively so many times. He was fine at first, smiling at me, seeming fairly interested in the process. After a few minutes he started to squirm. And fuss. And cry. And yell. And scream. I couldn't console him. I walked to the checkout line, with the most miserable little boy in the world in my grocery cart. I couldn't take him out (I had already tried, which resulted in a back-arching that almost launched him out of my arms, followed by bonelessness that almost made me drop him) so I wrapped my arms around him and tried, with only minimal success, to soothe him. The cashier took my credit card and ran it through the do-it-yourself credit card machine and then signed for me. Two people came over to help bag the groceries, and threw them into 2 carts. Someone walked out with us and unloaded the groceries into my car. They could not have gotten us out any faster. And the instant big-boy was in his car seat, he was happy as a lark.

Should we never leave the house again? Right now, that's my plan.

Back to the testing results -- it gets better. We were also told that Lively has severe cognitive delays. So in addition to autism, Lively also has impaired intellectual functioning. These do not go hand-in-hand; many people with autism have very high IQs. According to the psychologist, with intervention, it's possible that Lively might improve his development, including his cognition, and "catch-up." Right now, my almost-21-month-old is functioning at around 13-14 months intellectually. The worry is that he may fall even further behind. (I actually thought we were intervening with the endless appointments and therapies over the last 9 months, but evidently he needs more.) So we're going to intervene more.

Anyway, I am aware of autism now, and in fact, get to join yet another club -- mothers of autistic children. I know that this diagnosis is not a death sentence, and I know that my precious little boy is the same precious little boy that I had yesterday. I just want every opportunity possible for him, and shit, we barely stop reeling from the last diagnosis, and then we're hit with another. And I'm so freaking tired of it.