She Survived the Dentist

Apparently we hadn't made it clear enough to D that the dentist was going to fix her teeth not at his office but at Really Good Children's Hospital. We pulled up out front and she took one look out the window and said.....

"This NOT the dentist. I no going!!!!"

Fortunately, she did finally decide to get out of the car and go willingly (and by willingly I mean being carried and crying at the top of her lungs)

We got there at 7 and by 7:46 she was under anesthesia. Much faster than normal surgery (also they allowed us to stay with her while they started- which is another big improvement over the main surgery unit at the hospital)

It took about 3 hours to get all the work done and the dentist wants to work with her to desensitize her to dental procedures (since he suspects a big problem with her toothbrushing issues are a result of trauma related to multiple cleft procedures)

But for now her teeth are all healthy and after a meal of Tim Horton's strawberry Timbits (yeah I know dentist, Timbits, marvel at the irony) she is pretty much back to normal- whatever that means.

The Saga Ends at the Dentist Tomorrow

This is kind of long, so grab a cup of coffee and get comfortable

Back in June, the kids had their 6 month dental appointment and the dentist comes out and announces that D needs at least 4 crowns on her back molars. This is not necessarily a huge surprise since

1. Who know what her prenatal nutrition was like

2. Who knows what her nutrition/tooth care was like the first 14 months of her life

3. She has a cleft palate which means that some teeth are not fully developed and we aren't sure if those issue might also effect some of the other teeth)

4. Brushing her teeth is akin to torturing her. If involves large amounts of screaming and trying to hold onto her (all while worrying that this is going to cause some trauma related attachment difficulty) And although she has gotten a lot better about it the first years were a battle and the back teeth are the hardest to reach.

Anyway-

The dentist tries to get an x-ray to make sure the top teeth are not a mess too but her mouth is actually too small for her to hold the x-ray film. The dentist decides that she will just take the x-ray while they are doing the initial 4 teeth since she will be under anesthetic (so they can get the film in without hurting her). The dentist has a anesthesiologist who comes to the office and they do it there.

However,

since she has massive doctor/surgery fears AND has had minor complications waking up AND has a p-flap (which means that if they need to do a tube for any reason the doctor has to KNOW what he is doing) I decide to call the doctor directly and ask what he thinks.

I get him on the phone and he says "Well my partner handles the cases in that (my dentist's) office and he really can't do a case like that. I could do it, but they will have to schedule it directly with me. But if it were my kid, based on what you have said, I would do it at Really Good Children's Hospital since that is where they know her history."

I call the dentist and let her know we are going to do it at the hospital. I call the dental clinic and tell them I need to schedule dental work that needs done under anesthesia. They tell me that they "don't do that" unless the child is seen in their dental clinic first. I tell her "fine, schedule it" She says "Our next appointment is in March" I say "Are you kidding me? That's 10 months from now?" I hang up and call the dentist and tell her to schedule the procedure with the other guy.

Meanwhile, the more B and I think about this the less comfortable we are with the procedure being done in the office (for all the above listed reasons) In fact, one thing that was stressed to us during the p-flap surgery is to make sure that anytime she has anesthesia they know she has a p-flap. And in all honesty- she doesn't need another reason to be afraid of the dentist. So we know we have to deal with the hospital but aren't sure how she can make it almost a year with her teeth hurting.

Luckily, I was on the phone (for an unrelated reason) with the cleft coordinator at Really Good Children's Hospital and I asked her what she would do. She said she had some connections to the dental clinic and maybe she could get some names of local dentists who have OR privileges at the hospital. About an hour later I had the names of a couple of dentists. I called one and they were willing to see D (which also meant a second opinion about what work needed done) and tomorrow finally she is having the teeth all fixed- (which is great since she has been on a steady diet of Tylenol for the last week or so since her teeth hurt)

If you are still with us- thanks for reading and any good thoughts you can send to DW would be appreciated.

And while you are thinking good thoughts, I am dreading what this is going to cost us since my dental insurance will not cover any of the hospital facility charges beyond the anesthesiologist (even though it is done in the dental clinic at the hospital) and my medical insurance won't touch it at all since it is dental work (even though the reason it needs done in a hospital is medical).

Hopefully, it will be reasonable, otherwise D might be getting crowns for Christmas and I have no idea how to wrap them......

Autism and the Internationally Adopted Child

*before you start reading you will notice that there are lots of words like might, likely, possibly, potentially, many, etc. That is not accidental-  nothing here is an absolute.

Last week on one of the online group I frequent there was a huge flare ups of opinions after a woman posted some concerns about her newly adopted child. Opinions raged and are still raging (and name calling ensued) but at the crux of the debate were two issues. One was about being prepared for secondary disabilities that are commonly seen in conjunction with the disability that is known. The other was whether or not, in the midst of all this change and turmoil in the child’s life, can it be determined if the child has a developmental delay and more specific to that can you tell a child has autism. And the answer is you sort of can but at the same time you really can't.

So here’s another truth about international adoption. Orphanage care is just that- orphanage care and even the best orphanage is still long term group care. At it’s worst- well we have all seen the photos from Romanian orphanages. For some kids, orphanage care results in a set of issues (referred to as post institutionalized or PI). PI issues often manifest themselves as autistic like behaviors.

Which leads us to another truth about international adoption. It is traumatic and that trauma often results in behaviors that look very similar to autism. So here’s what we are left with

Many children appear autistic upon being joined with their new family, most of them are not autistic, but a few are.

Many of the behaviors that parents cite as the reasons to suspect autism, are in fact, the same behaviors that children exhibiting trauma shut down or PI issues will display. These include

not making eye contact

not responding to sound

not smiling

not talking

head banging (either with their own hands or on something like the crib)

flicking objects

rocking or other methods of self soothing

staring

I would not suspect a child who has just been placed with their new family after living in an orphanage for months or years of having autism on the basis of the above listed "symptoms" I think these are too easily confused with PI/trauma shut down and I think the vast majority of kids with THESE symptoms are likely dealing with PI/trauma and not autism

But I think there are other behaviors, ones that might not be recognized as red flags for autism that actually may be more revealing than the “normal” autism red flags.

Before I start lets first say that this is NOT A DIAGNOSTIC CHECKLIST. Even if your child shows every sign on the list it does not mean they have autism because you MUST also factor in the role their early experiences play and the trauma of being separated from everything familiar.

Let me say that again- THIS IS NOT A DIAGNOSITIC CHECKLIST. 

 EVEN IF YOUR CHILD SHOWS EVERY SIGN ON THE LIST IS DOES NOT MEAN THEY HAVE AUTISM. 

 The only way to diagnose autism is with a full evaluation using multiple assessment protocols and techniques. All this does is give you a framework to determine how likely it is that the child has autism. If they have all the signs it is more likely they have autism. If they have none of the signs it is less likely they have autism. Are we all clear on that??? That begin said- in the interest of fair disclosure, these are also generalities but they do begin to provide a framework for beginning to understand what is going on. But the truth is every child with autism is different in their presentation and for every “rule” there are also exceptions.

Things that might signal the child has concerns going beyond “normal” trauma shut down or PI issues  (particularly if they are still apparent after the first 72 hours)

- Not responding to their name. That response can be a small as quickly looking at you then turning away, or shifting their gaze- but they should respond to their name. If your child isn’t responding to their name, try having the guide say it (I still can’t pronounce K’s Ethiopian name the same as a native speaker) Also verify you are using the name they were known by in the orphanage. Many kids are known by nicknames (both mine were) and may not respond to their given names. This also assumes that the child has functional hearing.

- Not at least gazing toward an object when pointed out by an adult- Lack of eye contact is not a sign of autism in the PI child- but most shut down kids will at least briefly direct their gaze towards interesting objects when pointed out by an adult. If the child can't follow a point (as it is called in autism research) that is a huge red flag

-Flicking their hands in front of their eyes or hand flapping- I don't worry about other "stims" (rocking, head banging, etc as these are very often PI) but stimming in front of their face or hand flapping is more of a concern. Motor stims (including flapping) can certainly be PI issues but a hand flapping stim leans more towards autism whereas a rocking or head banging stim leans more toward PI issues)

- Not pointing with their index finger. Believe it or not in the US this is act
ually a fairly accurate predictor of autism- children who don't point with their index finger by 18 months have an 85% chance of being diagnosed with autism. However, there are children with autism who point with their index finger so it is not an absolute predictor. Also there are children with autism who develop the index finger point, but do so after 18 months. That said- pointing is a behavior that is culturally influenced and I am not sure that there are any cross cultural studies to determine if this holds up as a predictor in other, non Western cultures. So this one is complicated as you need to know if and what the cultural equivalent of our index finger point is. For instance in China, where pointing is done with the whole hand, so in that case pointing is not a useful indicator.

-Using the adults as a means to an end or relating to people as if they are objects. The child interacts with the adult to achieve a goal. (ie, takes the adult by the hand and drags them to the TV to turn it on or pick up a toy they want or child takes the adults hand and attempts to use their hand to turn the doorknob). Again this is one piece of the puzzle and you have to account for communication delays (either due to disability or due to the child speaking a different language) This is not the child who wants a glass of juice, drags you to the refrigerator, looks at you and says “oose” (or any other vocalization/verbalization). That is normal communication. This is the child who wants a glass of juice, drags you to the refrigerator, places your hand on the door then pulls, places your hand on the juice and pulls (expecting you to grab the juice as they pull). This child has made no contact with you verbally OR non-verbally. They are simply using the adult’s body as a tool to gain what they want. It is a subtle difference but a critical one. 

-Being oblivious to the people around them. Often a shut down child will still be taking in everything, even if they are not responding.  Pay close attention to whether or not they are paying attention to the local people- are they listening to the guide or the server at a restaurant or others speaking their language or are they oblivious to everything.  With PI, the kids will often respond to the guides, but not the parents.

So now you are seeing some red flags. But what does it mean? It means they could have autism, but it doesn't mean they DO have autism. 

So now what?

If you are a parent who plans to bring the child home no matter what- then you proceed.

But what if you are a parent who isn't sure that they can handle the needs of a child with autism? (and this isn't the forum to judge that)  But what do you do if you feel you are in that situation.

You need to try to get a complete (or as complete as possible) developmental history and consult with several medical professionals who have a significant expertise in BOTH autism and international adoption. It means that if you are in country take a deep breath and push your agency to slow down the process in order for you to gain more time with the child before anything is official. We know that for most kids experiencing trauma shut down or PI issues, after the first 72 hours with their new family, the begin to show positive behavior changes, even if they are small changes, IA experts say that their “spark” begins to show. For the vast majority of kid and families simply nurturing the child begins to bring them out of their shut down and alleviates most, if not all, of the parents developmental concerns- but this only happens if the parents take the time to really see the child.

It means, rather than scramble to get out of the adoptive situation, slow down and take time to determine what the situation ACTUALLY is, not what it appears to be on the first day. Even if you suspect autism, don't assume it IS autism. It could be, but it more likely is not. The best thing you can do if you are faced with what might seem to be autism and the adoption clock is ticking away is get the clock stopped. There may still be kids who don't come home with families due to concerns about autism, but it seems to me that for so many families if the clock could stop and they could just have more time, many of the concerns would begin to resolve themselves. And for those kids who still didn't come home, then at least we have a little more confidence that there could be a deeper issue and not parents panicking about a kid who just wouldn't make eye contact.

And for those who wonder how I am qualified to talk about this. I am a special education preschool teacher, I am a parent to a child with autism, I am the veteran of two international adoptions, (one of a child who was completely traumatized and shut down, the other of a child who had multiple red flags for autism, neither of whom actually have autism), but more over I have the privilege of working with a leading autism expert both personally and professionally and she continually educates me on what the newest research is showing, the newest diagnostic criteria and the what is happening at the forefront in understanding and treating autism.

Not a Complete Surprise but

D needs not one but two surgeries. After arriving 30 minutes late thanks to a traffic jam on the way to drop K off at day care at 6:20 am and rush hour traffic (at 9:15 am) in the 5 miles leading up to the hospital, we waited 90 minutes to see the therapist recommended to us. We decided to skip the evaluation from the genetics doctors since we have no idea of D's genetic history and at not quite 4 it seems a little early to start discussing her genetic risks and family planning. Once we got to see the therapist, she had D repeat sentences into a computer that made some kind of graphic representation of her speech. All in all she was very cooperative...

until we got to the scope room.

The ENT placed a thin scope in her nose so they could watch the mechanics of mouth while she was talking. All quick and easy unless the patient won't actually speak. It took about 10 minutes of a tense standoff between D and the therapist, but ultimately, she did repeat the sentences and within 20 seconds she was done.

So here's where we are

We need to schedule an appointment with our local ENT to get her tonsils removed. I am not looking forward to this at all- when A had his out he was miserable for a complete 2 weeks.

Then 6 weeks (or more) after the tonsils are removed she will have a second surgery to create a flap in the back of her throat so that she can keep the air from escaping through her nose when she speaks (this should dramatically increase her articulation) She will have to work with her local speech therapist to unlearn some of the bad speech habits and how to work her new flap but they expect normal speech (eventually) We are not surprised by the recommendations but were not planning to do the p-flap at a hospital 2 hours from home. They will keep her in the hospital for 3 days (2 nights) and then we will have to go back a couple of times for follow up. However, as much as we love our ENT and don't want him to feel like we are cheating on him, this team does this surgery a lot- it's a specialty there- and it has a "higher than the doctors would like" failure rate so it is important to go with someone who really knows how to do it. Plus our local team prefers to wait until the kids are older to do it, which makes no sense to me from a learning speech correctly standpoint

Now comes the crazy part of trying to schedule everything- this is the one part of working full time that stinks- feeling like I need to be at work to impress my new boss and needing to take possibly up to a week or two off. Hopefully we can schedule the tonsils the week before my spring break so the second week I will already be off. Luckily we haven't booked anything for our trip to DC at the end of March since it may not happen now.

Just another day in our crazy life

Wish Us Luck

D has an appointment tomorrow with a specialist at a Children's Hospital about 2 hours away from us. According to both her private speech therapist and her Early Intervention speech therapist, this woman is indeed the one who "wrote the book" (literally) on VPI (Velopharyngeal Insufficiency/Incompetence). A VPI problem is likely the reason that D's speech is still so hypernasal and difficult to understand. Hopefully, they will be able to find something to help her.

So for those of you who think good thoughts- here are ours for tomorrow

1. That is stops snowing so we can actually get out of our neighborhood and make the 2 hour drive in 2 hours

2. That there is school tomorrow for the boys so we don't have to drag them with us

3. That D is even remotely cooperative so that they can actually evaluate her

4. That there is a simple fix to the problem

That's all- nothing much

It's Not Poison- Honest

As many of you know, K has had some feeding issues since she came home- the "strangest" of which is the refusing to take a bottle. If you think you get weird looks at the mall when you are breast feeding try whipping out a cup and see how people stare! Especially since K looks about 4 months younger than she is. I can only imagine what people are thinking. (and to explain for those of you who also might be thinking, "huh??"- In Ethiopia, children are breastfed so bottles and formula are not readily available, or are expensive. In the orphanage they cup feed the babies with these little tiny cups. Not only is it easier in terms of obtaining supplies but it is also faster and healthier since cups are much easier to clean than nipples are)

However- she also has this complete and total aversion to fruit (and juice and anything sweet) Many times kids from other countries have to get used to "American sweet" because it is so much sweeter than what they are used to but K is taking it to a whole new level. While she will eat baby food with mangos (try to find that easily...) bananas caused her to gag to the point she almost threw up on me. So just because I have a sadistic side-here is me feeding her apples just to take a photo of her reaction. (okay, not really, we are trying to gradually get her used to eating fruit- and we are at the point now where she will make faces for the first bite and then willingly eat the rest-except for those darn bananas)