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Saturday, February 14, 2009

Preemie Parenting...A Lot Like Being An Octopus Who Is Waiting for the Other Shoes to Drop

Yup. I interrupt the Joys of Parenting a 39 Weeker (who was, admittedly, a bit fussy today) to bring you the regularly scheduled micropreemie parenting rant.

Let's just cut to the chase: it's not enough that Hallie suffered through a traumatic, way-too-early birth and all of the exciting features of a four month NICU stay. Nor is it sufficient that she has experienced (and continues to experience) GI hell associated with reflux that just won't quit, delayed gastric emptying (which is only moderately delayed now that she is on a high dose of reglan--75% residual at 90 minutes; the cutoff for normal emptying is 70%), food allergies, feeding issues, and a pretty distinct expressive language delay that is quickly being reclassified as a disorder. Nor is it enough that she was deemed globally developmentally delayed (by about 30%) at her most recent Early Intervention assessment.

No--we need to add some more oh-so-fun alphabet soup to the mix: suspected PDD-NOS (which, for those of you who blissfully dwell outside of the acronymic world that we inhabit, stands for Pervasive Developmental Delay-Not Otherwise Specified). In English, we can just simply call it Atypical Autism. Not quite Aspergers (which is a more highly functional variant) nor Autism plain and simple (which is a more lower functioning variant) but Atypical. You know, like all things micropreemie.


Now, a lot of our kids (meaning a goodly number of those kids whose blogs I list on the sidebar and whose parents I know from my extremely helpful micropreemie yahoo group) are about the same age as Hallie and their parents have been hearing the thuds of similar shoes dropping over the past few months. Ours came on Wednesday.

The good news from our ped is that Hallie hasn't lost weight on our attempts to get her to eat more solids (she's a hair shy of 30 lbs, which is only one ounce up from 6 or 8 weeks ago, but she's still at about the 50th percentile for her age; Lea weighed in at 7 lbs. 1 ounce, and hence had more than exceeded her birthweight). But, contrary to everything our ped has said about Hallie heretofore (she is great; what an amazing kid; she won't need special ed), this time he noted that he was concerned that she has a mild form of autism. He focused on her lack of typical eye contact (she will look at you, on her terms, but only on her terms and tends to be excessively focused on whatever activity she's engaged in, even when you try to redirect her attention); her clearly insufficient expressive language; her sensory issues (aversions to some, and seeking of many) and the like. So, in marked contrast to his decision a year and a half ago to forego the 18 month autism assessment, he suggested that we get Hallie evaluated as soon as possible.

There's a study going on at CHOP, but of course micropreemies (outliers that they are) are excluded from this. So that leaves us with a bunch of not-so-great options. We could wait 2 to 3 years (I am so not kidding) to get in to see a Developmental Pediatrician at CHOP. Or 2 years at Einstein. Or 2 years at St. Christopher's. Doing so, as the very nice woman at St. Chris' indicated to me, would, of course nullify intervening as early as possible to try to help Hallie. (She said that they did try to bump up the little ones into whatever slots get canceled, but that it still often takes a year to be seen). The other option: shelling out the big bucks (and I do mean big bucks...what ever was I thinking when I decided to become an historian rather than a developmental pediatrician who refuses to take insurance? We're talking $2500 out of pocket, no insurance taken, and no reimbursement possible because we'd be going out of network. This would mean no waiting period. But it would probably lead to penury. (Not ideal when you then have to shell out for private therapy). The intermediate option is the one we are going to take: get her in next month to the Center for Autism Research and hope that our two insurance policies pick up some of the $1500 dollars that the assessment costs. Needless to say, that expensive and swanky new Phil & Teds double stroller we just bought because it's the only one that fits through our front door and is practical for two kids who live in the city is looking cheaper every day.

OK, so where does this leave us? We're worried. Concerned. Troubled. None of this changes what we think about Hallie, of course. We know she's above average in terms of intelligence. But before you pull out all stops and say: hey, that means she can't be autistic, think again: one of the major markers of the strengths exhibited by PDD-NOS kids is an obsession with counting (check) and the alphabet (double check). All of this means that Aspergers is beginning to look like an enviable potential diagnosis to me. This is all pretty insane.

We also know that she thinks in patterns and structure; she can already do the puzzle that Jake gave her last week backwards and forwards and is doing jigsaw puzzles meant for the 3-5 range quite nicely. She loves shapes and can pick out rectangles and pentagons and not just squares and circles and triangles. That said, some of her pattern thinking is quirky: what in the world makes her associate her stuff Santa Claus with a squirty fish? Why does she have to carry around the rectangle and triangle pieces of her puzzle together? And that 'have to' thing--where she gets upset if she can't locate one or the other--that's a pretty major marker of something being off.

And why is it that she can say the alphabet, sing songs, repeat phrases, and not talk? And why does she groove on tropes so much? (By this I mean that she tends to repeat the same thing, in the same construction, be it "Elmo--red. No. Yes" or "Hello! How are You? I am FINE!" without variation). And why is it so easy for us to converse in song, counting, or alphabet recitation, but not words that convey some sort of in-the-moment meaning?

So, yeah, there are markers. And I want them to go away. I want them to disappear overnight and I want to be able to have a conversation with my kid.

On the plus side: Hallie is empathetic. She can sense when someone does not feel well and will reach out to them. She is loving and huggy. She is not prone to tantrums (indeed, she has fewer tantrums than her peers). And she wants nothing more than to interact with and play with other kids. She doesn't quite know how to do it in words ("Hi. My name is Hallie. Let's play ball!") but she will bring a ball to another kid and try to start a game of catch or, as it happened in the park today, she noted that this little boy (who was not into sharing, much to his very responsible dad's chagrin) was collecting and playing with sticks, so Hallie gathered up some sticks and offered one to the boy. She knows how to read a situation and manipulate it, albeit non-verbally. She observes what older kids are doing and tries to copy those activities (just try to convince her that she cannot use a Razor Scooter!). And she is the sweetest, most impressive little soul in the universe.

So a diagnosis, of course, wouldn't change any of that. That doesn't make us any less sad or stressed out. Or make us feel any less Job like, really. I mean, we've been to the belly of the whale and back, and can't we catch a break or two? Yes, I know, we caught the ultimate break. And her lungs are good, and shouldn't be. And her eyes are good, and shouldn't be. And her hearing is good, and shouldn't be. And she is talking and can identify most inhabitants of the animal kingdom (from panda to penguin and flamingo to frog. Koalas are a new one and leopards and tigers are still easily confused, but still). But why do more shoes have to fall? And more importantly even, when do the shoes stop falling? Or do they? We don't know the answer to these last two questions and they are the most vexing at all.

But, on the up side of things, again, because I am relentless in my pursuit of the up side: she can jump. She can hang on the hanging bar at gym. She does a pretty decent forward roll. And she's participating more than ever in her gym class (even the cleaning up part, amazing as that is if you have ever seen the floor of our home at 9:30pm). So we'll do what we need to do (what else can we do?) and help her be the best possible Hallie she can be. And love her. Always love her.

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Jen said...

As an SLP on a developmental team in Massachusetts, I hope and pray that you find a developmental team that you feel comfortable with and will follow Hallie through her school years as necessary, at as little cost as possible.

As a human, my thoughts are with you as your beautiful family continues to navigate this world of alphabet soup.

Lindsey: Mama of Andrew, Adam, and Ally said...

I'm so sorry to read this distressing news, I too am eager for the day when I'm no longer holding my breath for bad news. Hallie IS amazing and she has such a bright future and so much love and that's more than many kids can say. Hang in there!

Mommato4miracles said...

Sorry to hear this new distressing info. Although I don't have "micro" preemies, I know about waiting for the inevitable shoe to drop AGAIN!!! It always seems as though just when something is starting ot look up or resolve you add something new to the mix. How discouraging, frustrating, and potentially heartbreaking these new things are. I am sorry that you are once again experiencing this. I will pray for a miracle, that you are seen ASAP, and that it isn't an out of pocket expense.

Jo said...

I'm so sorry. It's so hard to hear more bad news, even in the midst of all the positives. Hopefully, early intervention will do wonders for her.

BTW, the story of her offering sticks to the little boy is just the sweetest thing ever. I would have just cried watching that. What an incredibly perceptive thing for her to do. And, so, so sweet.

On a side soap box - it's ridiculous that it costs to so much to get our children the basic help they need. Who made up these rules anyway????

Hang in there - give Hallie a hug:-)


Sara said...

I don't know what to say. I'm not gonna offer platitudes, because you know that's just not like me.

Belly of the whale, indeed.

If you need anything, please let me know.

Dubin said...

Hmm. This is all very confusing. All I can say (you can just read my mind for the rest of it) is that autism and non-autism and aspergers and all these labels describe a VERY GREY AREA. Don't let anyone label your kid anything unless you want them to! (For obtaining services, etc.) Beware the acronym. Hallie is Hallie. I can't think of anything more normal sounding than a kid her age being obsessed with counting and the alphabet!

Just take everything I say with a grain of salt and know that I love you guys. I hope you can get Hallie in to the evaluation as soon as possible and without such a crazy expense!

P.S. I assume Sharon feels better? Because I guess I would have read about it if you guys wound up in the ER... I hope she's recovered!

P.P.S. I have a crush on Lea. Do you think this will make Hallie feel bad? I hope not.

ACE 2010 said...

Head Start may be a good option for Hallie. It could open doors to services for her. At the very least it is something worth looking into.

Anne said...

Here's something that will get you to chuckle(at least briefly). Eliza spent a good bit of today lining up not one, but two sets of wooden blocks along the edge of my mother's coffee table. Looked like a freaking crop circle it was so perfect.

But here's the best part. I heard my mom on the phone with a cousin (we have a lot of those as you know) telling said cousin how great it was that Eliza could line things up in such a perfect circle and that she was such a tidy child!

So I guess what matters is how we view the world: crop circle-maker or awfully neat toddler.

Maybe if we go barefoot there will be no more shoes to drop?

Kirsten Wood said...

I hate the idea of Hallie possibly being on the autism spectrum, and of you having more "shoes" to deal with [euphemism of the century!]. But from what I've seen of Hallie, and read more recently, she has so many of the expressive and emotive qualities that are supposed to be absent or diminished in people with autism that I cannot believe she is far over on the spectrum, if she's there at all. Isn't empathy one of the key things people with autism are supposed to lack? Isn't empathy what she displayed in the playground?

I agree with the other poster: in this crazy world of medical (non)care and (non)insurance, accept diagnoses as means for getting services and, sometimes, clarification. And of course you know -- you've always known and fought to defend and extend the knowledge -- that Hallie is Hallie, not the sum of her various acronyms and labels.

On another note, if you want some encouragement about the possibilities of life with autism, I can think of nothing better for braniac parents than to recommend learning about Dr. Temple Grandin, in the admittedly unlikely event that you don't know about her already. I heard her on NPR a while back, and she knocked my socks off.

BusyLizzyMom said...

Your post was ours about 5mths ago. I really don't know when our kids get a break and when we can let our guard down for a second.
It is amazing our preemies have accomplished what they have but it doesn't make the hurt and fear any easier when we hear those words.
We were told at Elizabeth's last Dev. Ped. appointment that Apserger's may be a likely diagnosis. Like Hallie Elizabeth does not fit that description completely; she is social, does not fixate, has appropriate use of language BUT she has difficulty with eye contact, she has trouble with initiating play (her idea of asking a child to play is bonking them on the head), she prefers to be alone at school, she has odd/eccentric knowledge and has lots of sensory difficulties. After having the wind knocked out of me I sat back and watched Elizabeth and yes in front of a Dr. she appeared Autistic, she was flat and avoided eye contact at all lengths but at home she engages in eye contact and with lots of work she is engaging in appropriate play. I really at this point am thinking about refusing her being tested as I see her acting differently in clinical settings than at home.
I don't blame our kids for being guarded at appointments as most of them have involved some kind of painful test and being prodded.
I like what Liz had posted about earlier creating a new diagnosis for post microprem's, our kids definetley have difficulties but they don't fit the mold of SID, Autism or ADHD.
I think you looking into testing would be good and helpful to allay your anxiety and to know where to begin. The waitlist is horrible here as well but of course private is always available. You could come over the border it may be cheaper to do.
I really think that Autism is the new ADD (of course Autism exists and there are so may children who are affected by it)and really only take it with a grain of salt. Our kids are under such a microscope that they can be labelled with so many things if we allow it.
Sorry for rambling on and on, just know you are not alone. No one ever prepared us for all this when we brought our little ones home.

23wktwinsmommy said...

I'm sorry you are dealing with all of this. I am hopeful her evaluation will go well, and perhaps some of this is just "quirky" preemie behavior and nothing too serious...but as you know we can never be sure and it seems there is always "something" our kids are dealing with.
Hallie is an amazing little girl as you know and whatever her "diagnosis" is, I know you two will do everything to support and encourage her along the way.
Hugs to you!

Heidi said...

I'm so sorry, but like some of the other posters I'm confused only because Hallie shows empathy, initiates social interactions, engages others, etc - I don't know much about the spectrum but I thought social skills was a huge indicator? Those seem to be strengths of hers. This was something that's come up off and on with Moira because of her speech & sensory issues which I think have have an ENORMOUS impact on her social interactions. Hallie reminds me in many ways of our Mo. I was surprised to hear your doctor wants to explore the PDD-NOS further but I hope you'll be able to find a good testing program and it will provide reassurance and some answers.

And your octopus line? Cracked me up, it's so perfectly fitting. I may have to share that one if you don't mind. :)

Your dedication and researching and adoration of your girls and your relentless pursuit of the up side are all inspiring.

And you have surgery soon? End of this month? We hope it goes smoothly.

Sarah said...

Okay, obviously you know I'm going through this right now, and I've extensive conversations with another micro mom :)

Here's what our doctor did to expedite the first evaluation for autism screening. Our pedi called our center and asked specifically for him to be seen. The referral is great - the personal phone call is much better. I know you have a great relationship with your pedi so maybe this is an option.

The next step I took was investigating treatments. When it comes ot autism, treatment is not on the insurance scale. So, I tooled around our great internet resource and came up with RDI therapy. If you like, email me and I can guide you to some of the sites I found helpful (especially because I was able to incorporate some activities now in the home rather than waiting - and many RDI therapists will bartar services.) If we do end up with an autism diagnosis (right now his official diagnosis is speech delay, cannot rule out PDD-NOS), that is the therapy I will choose as it is easily incorporated into your lifestyle and not as invasive as ABA.

I just don't think that typical treatment will be able to help our preemies because our preemies are atypical.

And Ann's right (who helped a great deal throughout all of this - thank you, Ann!), a lot of it depends on how we look at our kids. I KNOW Emery isn't normal, but what is? Almost every conversation we have is in song, and at just 2 years old he can recite the alphabet, but he doesn't understand hardly anything I say to him. He has several red flags for autism but never clasically fits into the mold.

This is waaaay too long. I just wanted you to know you're not alone, and you can get started a bit on your own without having to wait out the system.

The Microblogologist said...

I hope you find a good option for everyone and soon. Hallie is very fortunate to have two mothers who love her and do so much to make sure she has the best always! And I am working on thinking of her name the right way after reading that it is not Hay-lee, apparently I pronounced a blogger friend's name wrong in a video I posted, oops! If I ever meet you guys I will hopefully pronounce all names properly, hehe.

AdelineandLila said...

I am the mother of twin micro preemies and am at the same "shoe dropping" mile marker. After trying out a few options in this area, we ended up going to Kennedy Krieger in Baltimore. Yes, it was out of pocket but the $1500 that was quoted only ended up being $480 due to the doctor coding the visit at a lesser charge. The wait was around 4-6 months. We saw Dr. Hoon as we too have been told that we are globally delayed (don't be turned away by his connection with CP). He was a wealth of resources. The system is incredibly integrated and puts CHOP to shame. Worth the trip.

For now, we are waiting to see a neuropsych at KKI when our girls turn 4.5. According to Dr. Hoon, the visit will be very informative. As always, the waiting game continues. .

Niki said...

"Our kids are under such a microscope that they can be labelled with so many things if we allow it." I had to quote that from BusyLizzyMom because it's something I know all us preemie moms have had to deal with.

Just recently I was ranting about a particular doctor of Sydney's who seems bent on diagnosing her with something. I love modern medicine and I know so many of us are grateful for it but I think our micro-preemies aren't even allowed to have their own quirks because they're at risk for so many things. Just yesterday a friend was telling me that her 2 year old daughter was obsessed with her fingers. She talks and sings to them, tells them to shut up and can entertain herself like that for an hour.

I guess the point of my post is that I feel your pain. Please keep hope alive while you wait for the evaluation and know that if you love Hallie, that love can help her overcome a mountain of things.

I'm thinking about you guys.