These Days

The white bleeding hearts. Pink ones appeared out back a couple days later.

It's been a long wait until Spring, but it has fully arrived. And our yard is a delight. I can't name much of what's coming up, and all I've done to contribute to the process was to clear some leaves out of the flower beds. Definitely a case of reaping what I didn't sow.

Lots of lovely tulips. Most are yellow, but there's a lone red one in the back.

So the wait for Spring is over, but I'm in another holding pattern as we're waiting for results of special education testing for Anna. The meeting with school personnel is in two weeks. Anna is actually enjoying the testing process, which is a big change as we both cried during and/or after previous episodes of testing in France with both the occupational therapist and the neuropsychologist. Testing during school hours with someone she trusts is so much better and likely a much more reliable measure.

She said that she did some math testing today--that it was fun and hard. Two words that don't generally go together in Anna's world.

I spent some time today re-researching sensory processing disorder online and managed to freak myself out. Some people find help in restricting dairy and gluten. I'm having enough trouble these days juggling our schedules and dietary preferences--the thought of going dairy and gluten free sent me into a near tizzy of wondering what Anna would possibly manage to eat within those confines...

And purple flowers

But then, I took a deep breath and closed my browser windows of kid-friendly dairy/gluten free meals, and decided to wait. We'll get results. We'll find out what resources are available through the school. We will think. We'll pray. We'll plan. We'll decide on priorities--a nutritionist? Occupational therapy? Tutoring over the Summer?

And we'll enjoy this beautiful place full of flowers that we didn't plant and maybe add a few of our own.

Forgotten in Puget sur Argens...

Since I last wrote about our weekly trip to Puget sur Argens, we had a couple easy trips and then others that have been borderline disastrous.

Two weeks ago, Scott went alone with Anna. I had parent teacher conferences with Justin's teachers that afternoon/evening. It had been a stormy week, with dangerous flooding in some areas, but there was no rain in Nice when they left. As they arrived in Puget sur Argens, they saw fewer cars on the road than usual, and there was no one at the office.

Turns out that there was a weather warning, and no one was to be on the roads. Our OT had lost her car in the flooding and was a little frazzled. So, Scott turned back towards Nice. Unfortunately, the promenade, which is the main road that runs alongside the sea, had closed because of enormous waves washing up from the beach. This backed up traffic so much that it took two and a half hours for them to get back.

The high point of their adventure was when they had to stop for a "bathroom" break for Anna along the promenade (before the part that was closed). There are three lanes of traffic, then a lane for parking, then the median, and then the traffic on the other side going in the other direction. So, they parked, Anna did her business, and they saw pebbles from the beach that had washed all the way onto the median--so over the beach front, the wide sidewalk, and the four lanes. Impressive. They collected a few as a souvenir.

Last week, the session was really difficult.  Anna was unable to do a new activity, and the rest of the session was a not too productive (I could write a whole post describing the whole thing, and 'not too productive' is an understatement). At least it was free because of the week before.

This week felt precarious. Anna was hesitant to go (Another understatement. Anna said she did not want to go, which was a vast improvement from a week ago when she said she was never, ever going back. Trying to be honest here...), but eventually all was well.

Until we got home. Scott was late to a church meeting because it had taken us an hour and a half to get back. So, I was trying to get Anna and all our stuff out of the car as fast as possible, and discovered that I did not have my purse. I had left it in the office.

I had the important things and light things sent, but my camera, which I almost always have with me, is taking a vacation in Puget sur Argens, as is my cell phone. And we don't have a session this week, so I have to wait till December to take pictures again.

Oh, and the basketball score for today--41 to 31, I think. They still lost, but did really well. It's improvement.

Church Weekend

Since Friday was a holiday, we headed up to our church weekend in the mountains Thursday evening.

During this time of year, the mornings are clear and sunny, and the weather can turn  in the afternoon. So, outside activities took place in the mornings.

Much to the delight of the kids, our first major activity Friday morning was burning stuff.

Branches and leaves had been collected during previous work weeks and put in piles. But they were damp and needed a great deal of tending to actually burn.

Some people worked on raking leaves, some tended the fire, some stood around chatting (me). But Anna was totally into the yard work.

I guess as a city kid, the opportunity to play with fire for a few hours was too good to resist. There was adult supervision of the fire, mind you.

 She did a lot of hauling leaves and branches to the fire. Lots and lots. For hours.

In sensory processing language, this kind of activity is called a heavy work activity, and it's very good for her on multiple levels. Throughout the weekend, she would head out and fill up the wheelbarrow and push it around. If our yard was big enough, I would be thinking at this point about getting her wheelbarrow for Christmas. Just kidding, but still...

She worked so hard Friday morning that she said she was sleepy near the end of lunch. So we went up to our room to have a little rest and she feel fast asleep for a couple hours. I dozed off too (all that chatting, you know).

On another note, my computer is making an odd noise, so I'm taking it in to get it quieted down today. Hoping it doesn't take too long, but there may be no new posts for several days.

Modifications

When I first began to research sensory processing disorder in June, I was scanning for practical tips. Things to help with sleep, food issues, schoolwork, travel...It was a relief to know that help was available, that progress could me made, and that medication would not play a role in treatment. However, as the books I ordered arrived, I found myself still scanning, searching for clear, step by step advice.

Although I'm a fairly empathetic parent, there have been times over the years when I have looked around and seen ninety-nine other kids able to do ____________ (fill in the blank--go to sleep at night, eat what is put in front of them, write legibly, sit still in church...) and gotten frustrated because I figured that either Anna just wasn't trying hard enough or that we were doing something wrong.

So, as I read, I was looking both for understanding of why she couldn't do all these things, and how to (as quickly as possible) get her to be like those ninety-nine other children.

The book Raising a Sensory Smart Child threw me for a loop right away. There was a section listing potential problem situations and giving suggestions for dealing with them. I flipped to it right away, again looking for something like "How to help your child with sensory processing disorder go to sleep in three steps." Or "Do this and your child will be able to stand in long lines at airports." What I found was very different. There were good suggestions, often long lists of possible suggestions; but it was also clear that this was not simply about helping the child to adapt, but modifying situations to adapt to the child. And sometimes even completely avoiding situations for a while that a child may not be able to handle.

Then, in September, I had a phone conference with our occupational therapist to get information to pass on to Anna's teachers. I was to tell them that, for now, Anna should write as little as possible. This completely threw me.  I had been thinking that we would ask teachers to tweak certain things, and then work to get Anna to catch up and be capable of being like the other kids in her class as quickly as possible.

So, I think I finally get it, at least ninety-nine percent of the time. Instead of completely freaking out when Anna lost it standing in line at the airport Monday, I was able to understand why she was freaking out. Instead of thinking, "Why is my kid being bratty when all the other kids are fine", I was in problem solving mode, "Why is this situation causing Anna to fall apart?" There wasn't much I could do, but I didn't fall apart.

Since I can't modify standing in lines at airports, I'm wondering if having some kind of ball or toy that she can squeeze on trips would help. And the line was not pleasant for anyone, it wasn't even worthy of being called a line, more like a mass of people all pushing ahead. I guess if we are paying EasyJet prices, real lines aren't included.

We have had stunning days here in Paris and look forward to a couple more days with dear friends before heading back to Nice.

Tuesdays

Every week we will be taking Anna for an occupational therapy session from 4:30 to 5:30pm on Tuesdays.

Here's how it went yesterday.

Preparations: Sunday morning I realized that the car we usually borrow from friends at church wouldn't be available this Tuesday. Anna was still recovering from a bad cold, so she and I were not at church.   I called Scott after the end of the service to ask him to talk to the other friends who had offered their car for these appointments. He talked to them and made arrangements to pick up their car Tuesday afternoon.

Monday night, Scott put ice packs in the freezer in preparation for cold drinks in the car for the trip.

Tuesday morning, I wrote a note telling Anna's teacher that we would pick her up at 3:20. We had our first appointment two weeks ago, then the occupational therapist (OT) was in Paris last week. So, none of us is used to the schedule yet.

I forgot to get the note into Anna's backpack and had to call Scott since he took Anna to school Tuesday morning (they rode scooters) to ask him to tell the teacher. She said no problem.

Tuesday afternoon, we got out the cooler and bought store brand Orangina and store brand Pringles to help Anna get through the hour long car ride. Her last appointment didn't go well, and in addition to communicating some suggestions to the OT, we tried to think of ways to make the trip more pleasant. We packed up a bag with magazines, a notebook to draw in, and Justin's DS (cannot locate hers).

I put this drawing in to represent Anna's drink in the car. I like her choice of color for the drink and how small and cute the lemon is and how the ice cubes are all lined up.

We walked over to the church to get the car and found that the garage was blocked by another car. There is a mechanic next door who sometimes parks cars in front of our door, so Scott popped in to ask them to move the car while we pulled out. Unfortunately, it wasn't their car.

Fortunately, the driver of the car blocking us had not locked the door of his/her car, so Scott got in, put it in neutral, and with the help of two men at church, we pushed it out of the way. The guys put it back after we got out. Craziness. We drove over towards the school.

Here's a corner view of the church. The garage is way over to the right.

Here's a close-up of the door of the garage with the do not park in front sign clearly marked.

While Scott was stopped at a red light up the street, I ran in to the school to pick up Anna, still mostly on schedule. We wanted to get to the appointment early to allow Anna a little time to recover from the car trip. Unfortunately, Anna wasn't waiting in the office. Someone eventually went up to get her.

While I was waiting, the physical education teacher and the director of the school were talking in the hallway. The p.e. teacher told me about an incident with Anna involving her unwillingness to play American football (which I think is clever on her part; she tried to change places in line so she could play defense instead of offense). If she does it again, she'll miss five minutes of recess. I probably need to have the OT talk with him. The director confirmed a meeting that we have with her Friday afternoon. Finally, Anna came down. She had been painting a pebble after studying prehistoric cave art and had to clean up. Her pebble fell down and broke when she was cleaning up.

We had a few mishaps getting into the car--spilled drink, accidental wack in the head, store-brand Pringles not meeting expecations, and I think someone yelling at us for not moving the car off fast enough (Scott had circled the block several times while waiting; there is no place to park in front). But in the end, we drove off with relatively little drama given what we had all experienced up to this point.

The trip took exactly one hour. There are a few stops for tolls, but otherwise no stops once we are out of Nice. We rang the bell at the office at  4:30, which felt like a small miracle.

This represent all the dangers and barriers on the way to the OT appointment yesterday.

And there was no answer. This was the first time we had traveled without the phone number of the OT with us, so Scott went over to the pharmacy to get the number from a phone book.

While Anna and I waited outside, the OT drove up. She had been meeting with teachers at a nearby school and had gotten stuck in traffic.

The appointment itself went very well. Anna started by showing off her violin and what she learned during her group violin class at school earlier in the day. She was super cooperative; the activities were game-like, so she persisted even when fatigued. 

We discussed the weighted blanket. The jury's still out on how much it's helping, so we will pursue melatonin. It's difficult to get it here, but it works for lots of kids with sensory processing disorder. 

I had to rotate this photo as I took it upside down, then noticed the hearts.

Anna read and then fell asleep in the car on the way home. Scott dropped us off at seven, filled the car with gas, picked up Justin from basketball, and dropped the car off at church.

We are on a waiting list for an OT in a town closer to us; she said maybe in six months. Depending on where her office is located, we could take the bus or train. There is no one doing treatment for sensory processing disorder in Nice, so our Tuesdays will look like this (hopefully minus a few mishaps) for a while.

I think it feels especially crazy because we have lived without a car and have made an effort to keep kids' activities close by--as in walking distance--until now. This drive feels like we're going to the end of the world.

The moment I've dreaded

The date has been on my calendar since mid August--Anna's orthodontist appointment on the 27th of September.

Last November, Anna's dentist had her see an orthodontist. It was time to correct her underbite while her mouth was still developing. Since this seemed early to me, I checked into it, but this kind of thing can be fixed relatively simply while the mouth is still developing.

The first orthodontist did not work. There is actually a long story involving tears and desperate prayers.

Another long story short: the lady who I buy fruit and vegetables from at the market recommended a kind orthodontist whose office is just down the street.

We saw her. She and her office staff were patient and kind, and Anna eventually got two simple retainers. The top was attached to bands on two back teeth and the bottom was to be taken out for meals. These were not to stay on for long--six months. June 1st to December, and then we would see.

From the occupational therapist's report, we know now that Anna's oral sensitivities are severe, so you can all imagine how this whole process went, and you would be about right. Anna was very brave, and usually brought a stuffed animal, but it was not easy.

Anna played with the bottom retainer constantly; it made a funny clicking noise when it clicked in. When she had a hard time wearing it, I let it go since I figured we had six months anyway, and we could go easy the first few weeks. She eventually got used to wearing it, but moved it around in her mouth constantly.

By the time we had her first appointment back, she had broken a wire off the top retainer. So it was taken out to be repaired, and we scheduled an appointment ten days later to have it put back in.

In the meantime, on a day when we went up to have a barbecue with friends out of town, we lost the bottom retainer. We have gone over the day over and over...she had it in her mouth in the car, not in the swimming pool, etc. Gone.

When we went to have the upper retainer put back in, I braced myself to inform the orthodontist that we lost the bottom retainer. But she wasn't there; she had a replacement. However, Anna would have none of it, and we had to reschedule for a few weeks later when our orthodontist would be back from vacation.

The second week of August we had our appointment and the appliance was put back on with a minimum of fuss. The orthodontist did not chastise me about the loss of the bottom one. She even said that we may not need it at this point because the bottom teeth looked like they were in good position.

After about ten days, one of the wires was broken off. Then a band around a back tooth came off (not magically by itself, mind you). We traveled to England for our orientation conference in Gloucester where eventually half the upper retainer was hanging from one side of her mouth. Another long story involving tears, desperate prayers, and a very patient and kind British orthodontist, and what was left of the retainer ended up in a ziplock bag.

So, the date for our next official appointment with the orthodontist was today. I wanted to talk to our occupational therapist for her opinion on how to move forward, which I did a few weeks ago. We both agreed that it may be better to wait six months and work on exercises to desensitize Anna's mouth in the meantime.

I practiced my little speech about all of this in my head. The orthodontist is always pleasant and understanding, but I was afraid of her reaction to seeing the mangled, dental appliance in a plastic baggie instead of in Anna's mouth. And, as always, I like to be the cooperative, not difficult person--two broken appliances and a lost one within four months qualifies as difficult, not to mention the difficulty involved in just getting my kid to sit in the chair, put her head back, and open her mouth.

The doctor was, as always, kind and understanding. She said we were probably right, then had Anna get in the new pink chair to see her teeth. This was not done without some difficulty, but finally Anna was seated with her mouth open.

And, get this, she said they are fine. Anna's teeth. As in, no underbite. She actually used the word miracle. In a few years, Anna will probably need braces to straighten out her top teeth, but that's it.

So, I feel, of course thankful, and somewhat bemused about the whole thing. It's been such a difficult thing since the whole process began last November. And now this chapter is closed for a while.

I'll end with the mangled appliance...

Sleeping with Lentils

I mentioned in a previous post that Anna has always had trouble sleeping. She can lay awake in bed for hours, looking at books, trying to stay still and quiet, coming out to go to the bathroom...at times until midnight. Fear can play into it; she will be fearful of an image from a movie, most recently Wallace and Gromit's The Curse of the Were-Rabbit. We have a big star night light in her room, stick on glowy sheep on her walls and ceiling, evening routines, etc. We've gotten mostly used to it, and Scott, being the patient adult after 9pm in the household, sits in her room with youtube sleep music playing on the computer while she drifts off to sleep.

This summer, as I researched sensory processing disorder and sleeping, I came across weighted blankets as a sleep aid.  Weighted blankets have some kind of heavy filling sewn in them--pellets, beans, lentils--so that their weight is evenly distributed. The theory is that the pressure the blanket gives causes some people to produce neurotransmitters like dopamine and serotonin which have a calming effect on the body. The blankets are available for sale, but there are instructions online for making them at home as well.

When I read about these, I was discouraged. They aren't cheap. And although the directions for making them are manageable for someone with a sewing machine and experience with this kind of thing, I have neither. The money and/or the hassle would be well worth it if I knew it would work, but there are no guarantees. They work for some kids, not others.

So, at our first face to face meeting with Anna's occupational therapist, we said we would like to prioritize helping Anna get to sleep at night. The occupational therapist went behind a curtain, and came out with this...

The O.T. made it herself, and each square is filled with a precise amount of lentils. It is small, reaching from Anna's chin, just past her feet. She has been sleeping with it for six days now.

Does it work? Well, for now Scott is still sitting in her room with sleepy music playing every night (actually me tonight). But, on the second night, Anna  got into bed before anyone was in her room. She seems to be feeling more secure. And she likes it.

So, we'll wait and see. It would be lovely for her and us if she could pop into bed at night on her own and be asleep within twenty minutes.

Handwriting

One thing that Anna will be working on with her occupational therapist (O.T.) is handwriting. Handwriting and presentation of work is very important in the French system, and there is a lot of it.

So, here is why, according to testing in July, Anna's handwriting isn't good:

She has a problem with visual perception when there is too much going on visually. French writing paper looks like this. It is the definition of too much going on visually.

During our telephone appointment last Thursday, our O.T. said she saw American lined notebooks at one of the large, Wal-mart type supermarkets, so I hopped on the tram and found these. They weren't cheap, over three euros each, but a bargain compared to finding them online and shipping them here.

Anna still needs a few small notebooks, which are not available here, but our O.T. had a friend who was traveling in Sweden and picked some up. So, we'll have them next week, when we have our first face-to-face appointment since testing in July.

Another issue with too much going on visually is the way French third grade exercise books and worksheets look.

Since this is definitely too much visual information going on, we cut the exercise that she needs to do and put a maximum of two on a page. We glue this into her snazzy notebook.

There is also some issue with processing information on the right side of the page if she is searching for information on a page. Practically, if we had a Where's Waldo (Wally for British folk) book, she would be better able to find him on the left than on the right. Fortunately, she isn't tested in her finding Waldo skills, but I'm sure it comes into play as she visually processes school work throughout the day.

Copying from the board is extremely difficult, partly because of the muscle movement involved in moving her head up and down as she copies. So, she is given a paper to copy from on her desk. Easy fix.

Anna also has trouble adjusting the amount of pressure needed to hold her paper in place and to write. There are fine motor issues as well, and she tires easily.

Handwriting is a concrete example of a seemingly simple daily activity that is so very complex for my kid. Some of the fixes are relatively easy, like photocopying, cutting, and pasting exercises. Some are less so, like searching for non-French notebooks. Others will only happen with time and with the aid of a professional. 

Even the easy fixes involved composing e-mails in French, appointments with both the O.T. and the teachers, and shopping trips (including a person I have never met before shopping for me in Sweden). 

There is also a lot of advocating involved in helping Anna get what she needs, a role that stretches me. I like for people to like me, and I don't like to push. And now that I know what we are dealing with, I do need to act and be pushy sometimes. Lately, a lot. 

Books

If you come to our apartment and peruse our book shelves, you will find out a lot about me. There are biographies, from Saint Augustine to Malcom X; novels, from Don Quixote to the Kite Runner; and plenty of books on Christian living, prayer, and theology. There is my brief foray into researching the plague. Not kidding.

But my books tell someone else's story as well. Today I am writing about our journey to understand our daughter.

I read lots and lots of adoption books early on. Now that I'm in the middle of actually raising my adopted children, I don't read them at all. Maybe because I'm too busy actually raising them.

That said, I will be dusting this one off as Justin is speeding ahead into adolescence and issues will need to be revisited and talked about on a deeper level.

This one is a more recent arrival on our shelves. Our children are growing up in a country that is not their "passport" country. So, their sense of identity, who they are and where they belong, will likely take a while figure out.

Anna has never ever slept well. Ever. She takes a long time to get to sleep, and easily gets to a state of panic if she has seen something disturbing or scary.

The research and principles here have helped us at least to understand what is going on.

I ordered this one last fall, when Anna was having tantrums when she came home from school, when she saw what we were having for dinner, when she didn't want to walk anymore...you get the picture. Although it didn't lead me directly to the real solution (get her out of her school and get her difficulties diagnosed), it did help me find ways to reduce her stress and help me to react appropriately to help her calm down.

So, in the end, I guess my explosive child was trying to tell me that she had a diagnosable condition that needed treatment and, "Get me out of the French school system now!"


So, all of this has led us to a diagnosis of sensory processing disorder. It may be genetic in her case, or could be a result of her time in an orphanage where she was not getting the stimulation and care that she would have had in a family. Justin was in an orphanage for the same amount of time, and clearly had some sensory processing issues, but they were not as debilitating as Anna's.

One note about the orphanage. This was not a place where the children were not cared for. It's just that a few nurses, no matter how loving and attentive, cannot give full attention and stimulation to each baby. Especially if a baby already has unknown special needs.

What SPD means for Anna is that she has trouble processing oral, auditory, tactile, proprioceptive, and vestibular information. Yes, two of those words are new for me too.

She is hyper sensitive in some ways, especially orally. Teeth brushing was a battle when she was little. Some of our most painful moments in the last few years (painful as in both of us were in tears) involve dentists, orthodontists, and mouth x-rays. Now we know why.

She is hypo sensitive in others, like her tactile sense. This explains her habit of practically squeezing the life out of Negra as Justin yells, "Stop torturing the cat!" This happens just about every day in our house.

Some of her issues are easy to fix. For example, she has always gotten sick to her stomach and somewhat panicky when we travel in a car, train, or airplane. She will panic after just a few minutes in an airport and complain about feeling ill. Now that I know that she is hyper-sensitive to smells, I give  her a small bottle of aromatherapy lemon scent that I picked up at a pharmacy and  she uses it whenever she needs it when we travel. Easy fix.

Other things will be more difficult. I'll post about writing to give an example later this week.

Other things she might always have to deal with. We don't know what these things will be yet.

Posts this week: Writing and Strengths

                            Day Two

Anna rode her bike to school today as I tried my best to keep up. It takes twenty minutes if we hit all the green lights. 

As she was  v e r y  s l o w l y getting ready this morning, Anna said several times that she hated her new school. But, knowing that this is the child who has spoken in superlatives since she first began to communicate,  I choose to believe that, " I hate my new school," really means, "I'm pretty tired this morning and would rather stay in bed." Which was how I felt this morning too.

Why the new school? 

She is at this small, bilingual school because I came along to a class picnic three and a half months ago. During the month of May, 1st and 2nd graders spend a day in an olive grove in the city, and each class performs a traditional Nicois dance. It's supposed to be fun. 

There are hundreds and hundreds of kids; and in my experience, it is either extremely hot or rainy. As I remember, Justin got the rain for both years. 

Anna got super hot. When I arrived around eleven a.m., the kids were either sitting in a small strip of shade along the stone wall or playing in another small piece of shade under a nearby olive tree. The children up playing were eventually instructed to come and sit in the shade strip because it was too hot.

So they sat. Their performance was scheduled for 3pm. It wasn't time for lunch yet. The teacher went off to get their class portion of socca, a traditional Niçois chick pea pancake thing. It took about forty-five minutes. The kids were hot, bored, and hungry. They were supposed to wait. They weren't allowed to play. 

You get the picture.

It wasn't really fun for anyone. Some parents eventually rebelled and allowed the kids in their charge to start in on their lunches. Our shade strip was getting smaller, so we moved to a large olive tree where the kids sat. Some played card games. Then it was time to change for the dance. Which the kids did under the olive tree. We walked over to our stage and waited in line while the fifteen classes still ahead of us took their turns. It was all behind schedule.

So, within the context of this day that wasn't very pleasant or fun for anyone, Anna was quietly miserable. Perhaps not more than anyone else in terms of comfort or expectations vs. reality. But I saw how socially ostracized she was and saw what her interactions were like with her classmates and how she is perceived by others. I suddenly switched from thinking that with lots of support, Anna can make it in the French school system to realizing that she could never thrive in this system. 

This last year was incredibly difficult for her at school. She showed increasing signs of stress from the very first days. Her only friends were in the grade above her. She struggled with the work.

Now that we have a diagnosis of sensory processing disorder, we know the causes of her struggles with school work. But I am also very sure that the small bilingual school is a place where she will be happy and cared for in a way that she wasn't in a large school where the emphasis was on children adapting to the system instead of teachers adapting to the child.

Even with a good teacher, which she did have last year, it just didn't work.

As I said to Anna, the new school is not magic. It will not all be perfect and easy. But it will be a better fit for her.

Next post...Inventions.