My POV

NOTE: Edited slightly as I offended a Tumblr user who was right to correct me that autism is not mild or severe. I should have been clearer in my POV as I have always tried to be aware of ableist language. I do not think that there is anything wrong with being autistic, or that my child needs to be "fixed" in any way. I'm just trying to give him as solid of a foundation as I can and help him process things, both in his body and his mind, more easily. This is all clearly new to us and I'm learning as we go.

I generally tend to stay pretty hush hush about this debate, but as a mum with a  kid on the spectrum, once in a while, I’ll pipe up to share my perspective. M was diagnosed with Autism Spectrum Disorder in November, and the past year leading up to his diagnosis and all the struggles that followed has been the hardest of my life. However, I could not be more thankful to have him. He is affectionate, bright, helpful, funny, alert and well-behaved, but doesn’t speak and has trouble focusing, imitating, etc. He was hitting every milestone and was the chubby-cheeked, bright-eyed, bushy-tailed image of health until he was 18 months old. He was speaking, albeit not AMAZINGLY, but had words, phrases, would imitate sounds, etc. Almost 18 months later and thousands of dollars of therapy, he’s just starting to do so again. He is also socializing at school, starting to potty train and improving every day. In October of 2013, less than a week after combined HepB and DTAP (diphtheria, tetanus and pertussis) shots, M began a string of horrible infections that lasted six months, without exaggeration, with no more than ten consecutive days of being healthy. His ailments ranged from ear infections and norovirus to waking up every morning with his eyes crusted over, eczema, bronchial infections, the works. He was very, VERY sick and we even took him to Urgent Care on three different occasions. During this time, he stopped speaking, withdrew in to himself, started to avoid eye contact and lost his spark. Of course, our main concern was just getting him healthy again. There is no way for me to know the hows or whys and I cannot assume that one factor resulted in his subsequent diagnosis more than another, but it was clear that something changed. Coincidence, likely, but still very strange (and challenging for any parent).

I won’t go through our experience with therapy and diagnosis and all that rubbish, but trust that this has become something that has literally consumed our lives, day and night. We have been tireless in trying to find solutions to help our son and have unfortunately learned of no less than five other families in our extended circle who are going through or have experienced the same.

One thing that we have learned is that many children on the spectrum suffer from gastrointestinal issues, and there is a line of thinking that certain dietary triggers (such as gluten, dairy, soy, etc) can exacerbate symptoms and act like drugs to a compromised immune system. Not so "out there" or quacky, right? Mind you, not a single doctor, specialist or therapist has mentioned possibly changing M’s diet since we started this journey last summer: it has only been through research and talking to other parents that we have found any insight. 

After implementing a new diet, we saw immediate changes. M brought his pillow in to bed with us in the morning to cuddle (and NOT squirm away, as was routine before) and became more focused, all within days. While many scientists and medical professionals are starting to recognize and study the brain/gut connection, little, if anything, is being said en masse about its effect on autism. Of course, diet alone cannot support a child with autism-like symptoms, but they can help create a better canvas to build off of in therapy so that skills can be developed/ regained. There is a line of thinking that some children are born with abnormal gut flora, which compromises their immune system (makes sense, right?) and that, when combined with a number of genetic, environmental and biomedical factors can make them more susceptible to autism-like symptoms. Some believe that for some kids, all of these combined, with the presence of poorly-timed, multiple dose vaccines, can result in encephalopathy that results in autism or autism-like symptoms. Whether I buy it or not, there are a few things I know unequivocally:

1. There is a federally-mandated court that has awarded billions of dollars in damages to families who have suffered adverse events from vaccines. These adverse events are listed in the inserts for every vaccine and published on the FDA website, including SIDS. Now, many of these events are self-reported, which is where things get sticky, but it is clearly stated that events are included in the inserts because of severity and frequency. 2. The CDC states all newborns, regardless of the mother’s status or exposure, get a HepB vaccination on the day they are born. HepB is a sexually transmitted disease. ASD aside: the assertion that ALL vaccines are TOTALLY safe for ALL kids in the crazy schedule that the CDC, APA and FDA recommend is pretty ludicrous and I largely believe that the media hype around measles is the kind of corporate-driven fear mongering that has plagued our airwaves for far too long. I think all the noise on the OTHER side about the CDC whistleblowers, potential toxins, etc is equally nuts. Of course this is a hotbed topic. Hell, it’s a hotbed topic even in my own home that has led to some very heated arguments. M is vaccinated, and L will be, too, when he is born. I’m immovable in my position on that. I recognize that most of the families in California who choose not to vaccinate their kids are privileged, selfish and uninformed, but all this public vilification and controversy hides the fact that parents are not given all information about risks and doctors do not provide alternatives (such as vaccines that are NOT combined doses). The story is not always as black and white as the media persists. I cannot expect anyone to agree with me or understand my position. I can only share my perspective and experience in the hopes that the people I love understand that this is a scene being played out closer to home than they likely imagined.

Point is: my kid kicks ass. We love him, but want to help support him every way we can. It's not easy for ANY parent. We just have a few extra hurdles in front of us. 

It's been a long time since I wrote, though I'm not sure why. In some ways, I marvel at how much my glorious, glittering boy has progressed over the past few months. But in others, I'm so afraid to even verbalize my worries that I become mute.

He is sweet and kind, sensitive and humorous, but this whole "not talking" thing drives me to tears some nights, and frankly scares the living shit out of me. The words he used to say are simply gone and the few times I hear him say something that *sounds* like a word ("water," "dragon," ANYTHING), I repeat it and he looks at me like I'm nuts. Either he is strong-willed or something just ain't right.

Regardless, I'm starting to feel like parenting can be really lonely business. Most of the friends that were in our roster have pretty much disappeared, and it has become increasingly difficult to plan any kind of rendezvous. If we try to plan in advance, M will undoubtedly get sick and we have to cancel. We can't ask people to get together on a whim because they're all too busy. The result? I'm feeling even more isolated than I did during my maternity leave. 

We are in dire need of a big change.

EDIT: For the record, I'm not at my best. We've had four different infections in the last ten days (strep, viral conjunctivitis, bronchitis and the norovirus). Not all at the same time, but it's a bit much when you're away from your family members and feeling damn lonely to boot. Sickness + cabin fever + career malaise + some disheartening news about someone I love dearly = not a very happy Boyntonator. Wamp wamp.

Baby Goth first bit my lip when he kissed me, then cried when I left. I should also note that Husband Goth was showing him 'Labyrinth' at the time. The more things change...

Baby Balboa? Jab jab cross.

Even when he's sick, he's the sweetest thing ever. That gently raspy voice gets me every damn time.

A Confession

I have ALWAYS loved this boy. Over the past sixteen months, I have marveled at the twinkle in his deep blue eyes, nuzzled the warm folds of skin behind his knees and kissed every fingertip at least a million times. But, in all honesty, it took me a LONG time to really feel like a mother.

I may have loved him, but I didn't KNOW him. And, in a lot of ways, he felt like a lovely little visitor. Just passing through, to give us a few smiles and teach us a few lessons.

But sometime in the last few months, I dunno, something changed. It wasn't just him rushing to the couch to give me an open-mouthed kiss before running away giggling, or the start of him plopping down in my lap emphatically, book in hand and ready for a story. Something CLICKED. We weren't just roommates or food providers/ eating machines. We became real friends.

A few days ago, I was in the kitchen cooking, and M ran in to join me (nothing new). But when he stared up at me with a gentle smile on his face and an answer when I whispered, "Say mama, angel," a white hot flash of recognition hit me. It was so familiar. I am by no means a crunchy person, but in that moment, I knew that I am indeed a mother, and have been many times over.

And there's something really sweet in knowing that, yes. Technically, this funny little person IS just a transient. He will grow up and follow a dozen dreams and fail and fall and make people smile and know that he is loved and lucky. But here and now, I can revel in getting to know the magic he holds and giving him every chance to share it. I will always be wild, wordy, ebullient and tempestuous Erica, but there's solace in knowing I can also be "mama." Plain and simple.

Three words: angry. Little. Drunk.

The salty: The boy has a cold.

The sweet: He fell asleep on me, just like the good ol' days.

Confession: there's a delicate, sad sweetness to these late night moments spent alone, going through old photos of you, my golden boy, missing you and loving you so terribly that my eyes sting and blur.

Ch ch ch changes

I haven't been writing here, but MAN, have I been writing. I finally took the advice of my beautiful and brilliant friend, Jiji, and started a storytelling class. For those of you unacquainted with this new(ish) practice, it's a bit like stand-up, but with bigger cajones and fewer punchlines. The goal is to take a moment from your life, tie it back to a larger universal theme, and create drama/ conflict by showing both the stakes and how your story impacted you. It is easily the hardest and most satisfying creative project I have done in years, giving me the chance to reflect and perform. But it's also making me feel like a lesser mum.

My time with the boy is limited enough to begin with, and with two concurrent classes and a new job starting TOMORROW (with a longer commute), I'm starting to get nervous. The whole work/life juggle is tough enough without taking on new hobbies with a fiendish obsession and trying to be femme Rocky. Regardless, I still feel like the boy is continuing to shine and grow and thrive in a way that surprises and makes me proud every week.

THE GOOD:

- He still calls almost everything "dada" (and only says, "MMMAAAAMA!" when he's livid), but has taken to also saying "Uh!" for up, "Eeeeees" for please and "Bbbbrrrrrrrrrr" for cars. Adorable? Heart-meltingly so.

- Since he picked up walking almost three months ago (that long? YEESH), he's half-running and almost always standing on his tiptoes to get something from higher surfaces. Being that he's so damn tall to begin with, anything on kitchen counters must be pushed back considerably to not come landing flat on his poor little noggin. 

- Since our beloved nanny K is pursuing her theatrical career more readily, we have transitioned Max into daycare. The owner is absolutely delightful and had told us that most kids move into the environment somewhat slowly, starting with a few hours and increasing every day. But our boy? Rolled in on day one and had such a good time that he didn't want to leave. He stayed six glorious hours and came home in a banner mood. He LOVES the other kids, despite not having spent much time around children before. Rockstar.

- Kisses on the mouth when I say, "Kiss" or make a smoochy sound? Best thing ever.

THE BAD:

- Newest beast move= full-on tantrums if he doesn't get what he wants. As in "I am going to screech at the top of my lungs, then stamp and cry and faceplant on the bed if you don't pick me up to let me grab something dangerous on the shelves, only to squirm away with my full body weight the second I'm in your arms." I should also note that the full body squirm has likely contributed in excruciating lower back pain that has plagued me on no less than six different occasions in the past three months. Tiny chips of muscle relaxers and double doses of ibuprofen are on a more regular schedule than Game of Thrones.

THE UGLY:

- The dreaded norovirus hit Team V this past week, with the fury of ten thousand Unsullied and three hungry dragons. The boy brought it home from daycare and was ill for the first time EVER on Wednesday night. Poor nugget. He got all pale and clammy, but the saddest moment had to have been when he laid, face down, on the ground just whimpering softly. But he was extremely brave and got over it within eight hours. It was extremely frightening for both Alan and I, as we've never seen him more than sniffle or sneeze a few times. Thankfully, we know he's building up his immune system by being around these other kids. But not so thankfully, we contracted it on Friday (at the same time), and were an absolute wreck. I have to admit: it really made me wish we lived closer to family and had the luxury of a bit of support. Regardless, we're better now...

... and I won't take so damn long in updating 'A Bump...' next time. Promise.

He loves The Cure. Smart kid.

Baby's brunch is faaaaaaancy. Smoked salmon pancakes with creme fraiche.

This photo gives me the warm fuzzies (and makes me think of all the bicep curls I do with the monster). Heaven.

(via Hanna Putz, Catherine Opie & More Female Photographers to Watch (Photos) - The Daily Beast)

Note to A...

And then there was this... Belly out. Milk-faced. Snoring like a geezer. Amazing.

A is usually the one to get the big belly laughs, but sometimes, I've got the magic. This is instant Prozac.