There have been lots of new and exciting things going on in John Paul’s world. He completed his first week of pre-school last week! I was not really prepared for it, mostly because who in their right mind starts school this early in August?! Actually, as it turns out, a lot of completely normal people do. But it rocked my world and I’m still adjusting.
John Paul, however, took it amazingly well. He had met his teachers back in the spring, and was familiar with the classroom, but I was not sure how he was going to react to going back there. He was SO excited. He was smiling and happy and gave his teachers a big ‘hi’. I was a nervous wreck dropping him off on the first day, but he loved it.
On that first morning, I anticipated taking him in by myself. It was an early morning, after all, and we are still most of us in Summer Mode. Sam, however, would have none of that. He wanted to go too so he could walk John Paul into his classroom and meet his teachers. There was no way he was NOT going to be a part of this! Well, as Sam was getting dressed, Andrew woke up and asked to go too, and then it snowballed from there and before I knew it, we ALL OF US were driving John Paul into school, even Patrick. John Paul and his support staff. TEAM JOHN PAUL!
On the first day, I left JP’s stroller at school so he could be transported from place to place. By the end of the week, though, I was able to have a lift installed on the back of our minivan (thanks to a couple of very generous sources, you know who you are and we love you and thank you!) so now we transport his little power chair to school. (And he doesn’t have to take the bus.) He did great – he drove it right into his class like a champ. The trouble actually came when it was time to leave school for the day and he didn’t want to leave!
This is what the lift looks like. So much for blending in. On the up side, though we can usually get a great parking space…
Therapy starts this week, and he’ll receive PT, OT, and speech in rotation on the days he is there. It will be exciting to see his progress in the weeks to come!
I’m hoping eventually that panicky feeling I get when I think of him in school will go away.. maybe?
The boys and I chose E.B. White’s first children’s book as our summer read-aloud selection. I didn’t really know what it was about, although I was familiar with it (I mean E.B. White only wrote 3 children’s books, and we’ve read the other two). I soon realized that the book is about a little swan born without a voice who learns to use alternative devices in order to communicate.
Well, of course as a mom I immediately started relating to my own little swan who has his own version of a speech defect and is learning to use adaptive communication. Throughout John Paul’s little life journey we are constantly witnessing his ability to adapt. And at times his adaptions actually become strengths. True, there is a lot that he is still unable to do (walk, for example). But in exchange for that he can drive around hairpin turns with a pretty complex piece of machinery. At age 3. True, he can’t form the thoughts in his head into words. But he listens and understands more than any of my other boys did at age 3.
So I found this little passage of the book, at a moment when Louie’s very verbose father is trying to console Louie about not being able to speak. He sub-consciously is trying to come to grips with the reality himself, for his is much more devastated by the realization that Louis is ‘defective’ than Louis ever is:
“Remember that the world is full of youngsters who have some sort of handicap that they must overcome. You apparently have a speech defect. I am sure you will overcome it, in time. There may even be some slight advantage, at your age, in not being able to say anything. It compels you to be a good listener. The world is full of talkers, but it is rare to find anyone who listens. And I assure you that you can pick up more information when you are listening than when you are talking.”
“My father does quite a lot of talking himself,” thought Louis.
His dad goes on to promise Louie that he will make sure Louis has the tools he needs to excel in his life. (Unfortunately that means breaking into a music store and assaulting the storekeeper to steal a trumpet, but that’s beside the point)
The point is, Louis goes on to make some pretty impressive accomplishments for a swan. After a while nobody really even notices that he doesn’t make swan noises.
At some point a year or so ago, I noticed that some people in the special-needs community used the term “differently abled” instead of “disabled” when referring to their children. I liked that idea – it seemed to fit John Paul perfectly. I guess I would much rather focus on the positive than on what he’s missing.
But then started seeing reactions and fallout about how the term is overly – politically correct. It claimed that saying “differently-abled” glosses over the reality of the disability and is like denying that the person has real difficulties. I suppose I see their point. I acknowledge that each disabled person has his own challenges, and that under certain circumstances, the term “disabled” really is a more accurate term. I don’t think using one term necessarily replaces the other.
I just don’t see it as a denial; at least not in John Paul’s case. On any given day, there is a good chance that John Paul will hear a comment or impertinent question (however good-natured) from a stranger that emphasizes the negatives of his appearance. (At the pool: a girl asks where his arms went, and after I give her an answer remarks, ‘oh, he’s one of those people. i’m sure glad i wasn’t born that way.’) It’s natural to wonder about his limbs, but it’s sort of astounding how often people feel it is okay to ask what’s ‘wrong’ with his arms, even though we are total strangers. (What happened to ‘hello, it’s nice to meet you?’ first?)
In other words, John Paul doesn’t need any reminders that he’s disabled. He doesn’t need anyone to point out that he’s missing some bones in his arms or that he does run around like his brothers. He knows. Tactless people remind us all the time. He might, however, need a little positive encouragement that he is wonderfully made. He might need us to reinforce the idea that he is a treasure, and that he can do things – he just does them differently. And if we use the term ‘differently-abled’, it’s because it’s the truth, not because we’re in denial or because we’re afraid of offending him.
On a side-note, this weekend the Wimbledon finals for mens’ and womens’ singles. What you might not have seen covered were the finals for the mens and ladies wheelchair doubles. I admit I didn’t even know these tournaments existed until yesterday. (You can watch highlights from last years’ final here to get idea of the amazing athleticism of these individuals) I don’t know about you, but the term ‘disabled’ doesn’t seem quite adequate here.
Anyway, I guess I’m kind of sounding like a bristling mama lion, but you get the idea. Everybody wants to be known and loved beyond what is initially, outwardly perceived. I would argue that disabled persons, on top of their own disability, are automatically at a disadvantage in this area because people don’t know how to or don’t want to overcome the barrier. The idea of interacting with someone who is disabled can be intimidating — you might not know what to say, you are afraid you’ll say the wrong thing, you don’t want to offend but you want to be sincere– and oftentimes taking the focus away from the disability and focusing on strengths eliminates that barrier.
After all, John Paul is a little boy, ultimately. He won’t eat anything green or anything mushy. He throws fits when he tell him no. He loves trains and cars and dinosaurs. He has a little blankie he likes to sleep with. And he just wants to be friends. He might not be able to run but he wants to have a race with you up and down the driveway. He might not be able to say your name yet, but he will listen to whatever you have to say.
We are not the sum of our weaknesses and failures. We are the sum of the Father’s love for us and our real capacity to become the image of his Son — St. John Paul
The year is a little over halfway gone, and amazingly enough I am still plugging away at my list of books for 2016. The good news is, I’ve read half of the books on the challenge list. The bad news is, I’ve read through all of the books that I actually wanted to read anyway, and what’s left are the ones I’m not really crazy about.
Also, it seems like I find new books almost every day that I’d rather read instead! So the challenging part is still ahead of me.
Here’s my take on what I’ve read so far:
A Book Published This Year:
This was only the second novel published by this author, and it was very different from her first book. I didn’t like it nearly as much as Major Pettigrew, but it was still enjoyable. It reminded me of too many other stories, thought, and the sentiments of some of the characters seemed a little too modern and jaded for a pre-Great War world.
A Book You Can Finish in a Day:
Softly the Angelus sounded and over the roofs of the village / Columns of pale blue smoke, like clouds of incense ascending, / Rose from a hundred hearths, the homes of peace and contentment. / Thus dwelt together in love these simple Acadian farmers, – / Dwelt in the love of God and of man. Alike were they free from / Fear, that reigns with the tyrant, and envy, the vice of republics. / Neither locks had they to their doors, nor bars to their windows; / But their dwellings were open as day and the hearts of the owners; / There the richest was poor, and the poorest lived in abundance.
Evangeline is Patrick’s favorite poem and I can see now why it is. It is a tear-jerker, though — there is a profound sadness in this story, but there is beauty in sadness and it is not without hope. The world of Evangeline is fading away, if it even exists anymore – a world of forgiveness, self-sacrificing love in suffering and patience, and the belief that this world is not all there is. But ultimately, this book is about hope.
A Book You’ve Been Meaning to Read:
I liked reading Alice in Wonderland, although I found myself wishing that I could read it without having seen the Disney movie. I wanted to appreciate it for the impact it had when it was first published. In fact I spent most of the time thinking about all of the stuff that Disney took out (the griffin) or added in (Tweedle Dee and Tweedle Dum). It was hard to read it with a clean slate. I loved the tea party scene, which was more subdued an very hilarious.
A Book Chosen for You by a Sibling:
This book was hard to put down and I was sad when I finished it. Although at times the author was a little over-the-top poetic, I thoroughly enjoyed his descriptions of people and places of Rome. This is basically his journal from the year he spent in Rome with his family, trying to write a novel but never being able to write anything but his experiences of Rome. He makes some pretty astute observations from a non-religious perspective about the Church and the papacy; although he is far from ‘getting it’, he appreciates something about its beauty and grandness. [It left me thinking how much work the Church has to do educating people about its liturgy, history, etc. (Easy for me to say, right?)]
Before electricity, before the umbrella pine out the window was even a pinecone, when the night sky above the Janiculum was as awash with stars as any sky anywhere, Galileo Galilei assembled his new telescope at a banquet in this very garden, just beneath my window, and showed guests the heavens.
I generally try to keep a reading journal and write down memorable quotes for the books I’m reading. For this book, I found myself photo-copying whole passages and taping them into my journal. It was just so beautifully written. (I noticed a lot of negative reviews on Goodreads of people who couldn’t stand his wordy musings and thought he tended to go on and on. I guess he was kind of long-winded and maybe a bit overly flowery, but it didn’t bother me. Maybe because I love Rome so much. If any place deserves flowery language written about it, it’s that place.)
A Book You Own But Have Never Read:
This book. Oh, this book. I chose this book for my Lenten reading. It is so, so good. It is so simple, but so deep. You have to give all of your undivided attention to this one. Benedict’s writing is so simple and direct that you miss the profundity if you read it distracted. I had to set aside special time in the morning to devote to this one. Favorite quote:
…The proclamation of the Gospel will always be marked by the sign of the Cross – this is what each generation of Jesus’ disciples must learn anew. The Cross is and remains the sign of the Son of Man: ultimately, in the battle agains lies and violence, truth and love have no other weapon than the witness of suffering.
A Book You Have Read At Least Once
This was my third time reading Persuasion. Reading Jane Austen’s novels a second and third time, you notice a lot of details about the characters and what’s going on in the background, since you don’t have to focus on what’s going to happen. Since I already knew where everyone was going to end up, I noticed that a lot of the dialogue had underlying meanings. I noticed how much they discussed class and society and moving around in it and how obsessed they are about it. They discuss it all the time, and the way she satirizes certain viewpoints is hilarious. I appreciated the genius of the author a little more this time around. Sure, I love a good love story; but sometimes I wonder if most people who read Jane Austen’s books for the hot guy and never get past the wet shirt? I’m glad I read this again; I think there are certain books that you just have to read over and over.
A lady, without a family, was the very best preserver of furniture in the world.
Well, that’s it for now. Now for the hard part – the banned book, the intimidating book (still intimidating me), the book I should have read…. Here goes nothing!
Sometimes my favorite sorts of vacations, especially with lots of kids, are the ones where I’m not away from my own bed very long. We took a quick little overnight excursion up to Pennsylvania this week and it was ALL ABOUT THE TRAINS.
Sam and John Paul share an obsession for trains. The other three boys are old enough now that they’ve kind of grown out of it (Thomas will openly and gladly tell you how much he doesn’t like them), but I think they still had a really fun time. The places we went were really family-oriented, and very well thought out. (Think: convenient and clean bathrooms and snacks when you need them)
I forget where we first heard about the Strasburg Railroad. It seems like from the time George was little, whenever we stopped anywhere with those racks of tourist pamphlets, one of the boys would pick up the pamphlet that advertised “Ride a Real Steam Train in Strasburg, PA”. So it has been on our radar for years.
We decided since we weren’t taking a long family vacation this summer, this was the year to ride the train. We arrived early afternoon on Wed. (it was about a 3 1/2 hr. drive) and stayed through until the next evening. It was ample time to do everything there was to do, without feeling rushed. We are at the unique season in our family when we have somewhat older children who can be a help with the littles and we have no nappers, so we can do things in the afternoon. On the other hand, the little kids are still little enough that they are still pretty needy and get tired and cranky, so we can’t over-exert. So we had to strike a balance with how much we did.
For these reasons, the set-up at the Strasburg Railroad was perfect for us. There was more to do than just ride the train, but it wasn’t overwhelming. There were a few little rides that they could ride – a smaller steam train, these little self-propelled cars (the boys LOVED these), and a old-fashioned hand-pump car for the bigger kids. There is a restaurant right there (we got ice cream- $2.50 for a huge cup) and a few gift shops. There’s also a fenced-in playground and nice, big, clean public restrooms with a changing table.
As for the steam train ride, it was really neat, if you like trains. I’m pretty indifferent to them, honestly, but since Sam has been obsessed about them for at least a year and a half, I couldn’t have helped absorbing some of that enthusiasm. The engine is big, and loud, and startled John Paul a bit. He was apprehensive about getting on. But once were all on, everyone had a great time. We sat in the open-air car, because the weather was unusually gorgeous. The ride lasted about 40 minutes round trip.
Interestingly, the engine pulls the train backwards for the first leg of the trip (we were in the last car, so we were right next to the engine and it was pretty loud). Then at the other end of the line, the engine uncouples, goes to the front and pulls it front-ways for the return trip.
One thing I didn’t realize but wish I had known ahead of time is that the train makes a stop on the way back at a shady picnic area with a playground. So if you want to, you can pack a picnic, get off there, and have lunch and play for a while and hop on the next train (they run every hour all day long). That kind of stretches out the ride a little longer.
There’s also a big train museum across the street from the train station. You can purchase a bundle ticket for the museum with your train ride and save a couple of bucks per ticket. There are a lot of neat engines and old coaches and boxcars to see. The big hit for the boys at this place was the kids’ section of the museum, which had a huge Lego city with several electric trains and other moving parts. There were also tables of Legos to build your own trains, wooden trains sets, plastic electric trains, books about trains, and pretty much any train toy you can think of.
For the bigger kids there were O-scale (gauge?) model trains set up with a bunch of switches in the tracks so they can see how the trains switch tracks and uncouple and stuff like that. George and Andrew had a great time with these, although they did get frustrated with keeping the trains on the tracks. We definitely could have spent more time in the museum, but unfortunately we got there only an hour before they closed.
Other things to see in the area: the Choo Choo Barn, a huge model-train display with tons of mechanical moving parts (very fun), the surrounding Amish community, and nearby Lancaster with tons of shopping and touristy things to do (which we didn’t get around to doing). You can’t help but feel the presence of the Amish; the Strasburg train station is surrounded by beautiful farms and seeing horses and buggies is a common occurrence.
One time when we were driving to our hotel we had to stop because an Amish boy about George’s age was helping his father herd cattle across the road to the barn. I found the whole atmosphere is peaceful and comforting. It’s far enough away from the commercial, touristy part of Lancaster (the outlet malls and Dutch Wonderland, etc.) that you’re in the country, but it’s only a five minute drive if you want to go shopping. Super family-friendly bonus: there’s an Aldi and a Chick-fil-A less than ten minutes from the train station. We utilized both.
I’ve saved the boys’ favorite part of the trip for last: we stayed overnight at the Red Caboose Motel, which is entirely made out of old caboose cars. We reserved the Large Family Room, which had two bunk beds and a queen-size bed. (We took our own pack-n-play for JP to sleep in). It is super close to the train station; in fact the train goes right past it. This was nice for us because we tend to get lost easily (but don’t tell Patrick I said that).
I will be honest and say that this motel is not one of the more luxurious places we’ve stayed. But it was fun, it was perfect for kids, and most importantly it was clean and comfortable. The motel offers buggy rides, a free petting zoo, a big picnic/playgound area, an ice cream shop, and a restaurant. We are usually on a pretty tight budget when we travel so we had packed our own food and ate dinner at the playground. There is a huge barn on the property where they’ve turned into a theatre and they show movies every evening with popcorn and snacks. The showed Inside Out the night we were there. Since everything had closed at 5 and we were too tired to go anywhere, it was a perfect way to end the day.
In the end, I think it was the perfect little excursion for us. All of the boys agreed that they want to go back someday. Sam hasn’t stopped talking about Strasburg since we got home!
This week a friend from our parish who is a master carpenter came and built a ramp in our garage for John Paul’s access. Eventually we will move the washer/dryer out of the mudroom and widen the doorway into the house so he will be able to drive it into the house.
He does very well steering it around outside, and loves the ability to move freely where he wants to go; so much of the time he is still dependent on me or Patrick or someone big enough to carry him (George does pretty well, actually) where he wants to go. But the chair gives him a new freedom. He is still really hesitant to drive it inside (I drove it around the back and into the basement for the winter so he could try it out..and he wouldn’t touch it). I think because it’s unfamiliar territory and he’s afraid to crash it. But he might just need to get used to the idea and grow a little bit.
In order to access the basement and the upstairs in his chair, we will eventually (years down the road) need to install a lift, which will be kind of a huge expense and will probably involve pretty intrusive renovations. But that is down the road. For now, he is still light enough to be carried, and prefers to move around inside the house without using his powerchair. It’s possible that this will always be the case. Perhaps with surgery and therapy, he may even be able to stand on his own someday. But we will try to at least give him the option to use it if he wants to.
Other news on the JP front:
we met with the school system to qualify him for the special needs preschool program in the fall. It’s hard for me to believe he is old enough to go to school! I really liked the therapists we met with, and I think that school will be very beneficial for him. My dream is that one day he will be able to go to school with his brothers, if our school could ever accommodate his needs and if his speech improved enough that he didn’t need speech therapy. But that’s for some future date and for God to decide! For now it is helpful and a relief to have access to the resources of the public schools.
He continues to see a speech therapist weekly, and has made huge progress (in lots of little baby steps). He can say “I want ___” if prompted, he uses pictures as prompts to communicate with us. He makes several new consonant sounds, “d” “B” “sh”, etc., mostly babbling and not connected to any particular words. But you can tell he’s experimenting. I would guess, speech-wise, he is doing now what a 12-18month old does. But cognitively, he is right on track with a 3-year old (read: lots of will power and lots of tantrums). As you can imagine that causes a lot of frustrating situations, but the picture prompts and the few words he says certainly help. (He knows a few signs, too. signing “water” is adorable)
His platelets are so steady, that we only see the hematologist twice a year now! we check them every 3 months. Sometimes he has little bruises show up, but other than that, we hardly even think about it anymore. Much, much different than that first year.
Generally speaking, he’s keeping me busy, but he’s doing really great and we’re enjoying the spring weather and trying to stay out of trouble!
I’m returning to my little, old, much-neglected blog here to post some photos.
We all spent a week in Nashville for Easter with my family. It was a great trip — we all stayed in a big house that had a ton of room for everyone. We were able to go to the Motherhouse for Easter Sunday and Sr. Mary Grace came back to the house with us for brunch and an Easter egg hunt. My cousin John and his wife Anji, who also live in Nashville, also came over for brunch. I had never met Anji, or their new baby Finn, who is should be inducted into the hall of fame of MOST ADORABLE BABIES EVER. So that was really, really fun!
We did fun things like go to parks and play frisbee and corn hole and watch the NCAA games on the big 10′ movie screen that was a feature in the vacation house. We went to a really awesome toy store. We drove out to Sr. Mary Grace’s school and saw where she lived and worked (she’s a principal at a small town K-8 Catholic school outside of Nashville). We ate a lot of yummy food. (A LOT of food. Well, not on Good Friday, but from Easter onward, of course.) The weather was beautiful, nothing too disastrous or bad happened (I’m always waiting for one of the boys to break something, of course), and it was just a great week.
Nashville is a nice central location for all of us to gather, since the Motherhouse is and always will be Sr. Mary Grace’s home base and Joannie lives there, too. But it’s also lucky for us that the place that we can most conveniently visit our sisters is also a really fun city with a ton of fun stuff to do and great food and great music. (The only downside to this is that more and more people are discovering Nashville’s awesomeness and we noticed a significant increase to the traffic congestion than in the past.)
On Easter Sunday evening Joannie invited a good friend of hers, a musician who is also a priest (Kevin McGoldrick -you can get his album on iTunes and his website! it’s really good!) and a couple of other musicians (Colm Kirwan and Bradley Banning – both really great guys and very talented) over for dinner and dessert and in true Nashville style we all sat around the living room for some great music afterward. Colm is from Ireland and so the boys wanted him to play the Rattlin’ Bog, and he very kindly obliged, even though it’s probably the most boring song to play since it only has two chords. But we sure had fun.
As a bonus, Thomas felt compelled to join in the musical sharing and got out his violin and played us all a rendition of his Twinkle Little star variation. So cute. The guys were all very kind in their compliments and I was proud of him for not being too shy to play. I know I never would have!
There is another blessing about visiting Nashville, for me at least, and that is because there are several individuals who, through my two sisters, knew and prayed for John Paul from the beginning. We were able to visit with some of those people and share all of the ways in which their generous prayers have been answered. It is a special joy to know them and see how far and how deeply John Paul has had an affect, just in the short time he has been in the world. That for me will always be something I hold onto.
Here are some of my favorite photos from the week. But there were really so many great ones, and videos too, that I couldn’t help myself. Scroll all the way down for a video journal of our week of Nashvillian adventure — mostly just photos of us being silly and not much of general interest, unless you know us! Mostly I just like wasting time using iMovie.
This week, as you may have heard if you have a pulse, there was a big snowstorm on the east coast. We were tired of it before it started, and embarrassed at the spectacle we made of ourselves once it arrived. I could feel the entire city of Buffalo collectively rolling their eyes at us. I couldn’t stand to get on Facebook because of the inundation of photos of snow-covered patio furniture and cars.
There’s a hilarious post out there comparing snowstorms of the 70’s and today…did you read that? …i’ll try and google it —> here it is. Hilarious. and so true.
However, two feet of snow IS a big deal. In our little corner of the world, where the snow that does accumulate rarely lasts for more than a day, we had a blast sledding and playing in it as soon as it started falling. Our backyard is one big hillside, so multiple sled tracks were constructed by the end of it. Even John Paul got to go down a couple of times.
Here’s a ‘video journal’ of our fun times in the snow. All obnoxious over-reporting and over-sharing aside, it was definitely a memorable snowfall, and one that the boys will be talking about for a long time!
Same author of Mr. Pettigrew’s Last Stand, which I really enjoyed. This was also recommended Sherry, who always seems to know what books I will like, so I’m looking forward to reading it.
A Book You Can Finish in a Day:
This is my husband’s favorite book (it’s actually a poem) to teach for American Literature class, which unfortunately he doesn’t teach anymore. He absolutely loves it, and in fact when he taught it to his students, they loved it so much that they got all of their parents to read it, and he gave a little evening lecture/book club on it so they could all talk about it. I’m sure he would disagree that it could be read in a day, since he says it is a poem to be closely and carefully studied to appreciate its greatness. But it’s short, and I’m going to try. I can always go back and read it again later.
A book you’ve been meaning to read:
Before Christmas I was in a cute little coffee shop buying Christmas gifts and the owner was telling me about an event they held at the shop recently with a local artist. They had readings from Alice and the artist had a gallery-type showing of their collection of pen and ink prints from the story. There were still several prints on display that day, and they were enchanting. And then I realized that I have never read the story through from start to finish. I think we read excerpts in grade school, and of course I have many Disneyfied images of the story in my head. So I promised myself that day that I would read it soon. It’s enigmatic to be sure, but there’s a sense that it’s one of those books that everyone should read at one time or another.
A book Recommended by your local librarian or bookseller (or Goodreads):
Rather than trusting a stranger, who has no idea what kinds of books I like or what might interest me, I decided to go with a recommendation from Goodreads, based on books I’ve read and saved. I guess that’s kind of boring and safe to do that, and not very challenging, but the time I have to read is so limited, I don’t like to waste it on books that i’m going to find offensive or boring or absolutely hate. So this one was pretty high up on the list, and it sounds pretty interesting. It’s the first of a series of historical fiction about Williamsburg, just a hop, skip and a jump away. Also I think the cover is marvelously cheesy, so it’s got that going for it.
A book you should have read in school:
I’m going to hate this one, I know it.
a book chosen for you by your spouse, sibling, child or BFF:
Joannie chose this one for me. It’s about Rome, isn’t that a shocker? I don’t mind at all, though – she told me a little bit about it and it sounds fun.
a book published before you were born (1979):
a book that was banned at some point:
a book you previously abandoned:
I started this not long after I was out of college, and I can’t imagine why I never finished it! I started it not long after reading The Moonstone by the Wilkie Collins, and I loved that book. So I’ll give it another go.
a book you own but have never read:
This could also fall under the ‘abandoned’ category. And actually, almost all of the books on this like fall under this category. I thought it would be a good Lenten read (right around the corner).
a book that intimidates you:
Yeah, we’ll see about this one. It’s like a bazillion pages long.
a book you’ve read at least once:
Read it twice, loved it; probably my favorite of Jane Austen’s novels. Wish me luck! I guess we’ll see in 2017 how I did….
Happy Advent! I thought I’d take some time to write a little summary of how John Paul is doing lately, since it’s been a while. Recently, we had a couple of appointments at UVA that went well.
First of all, we had a follow-up with Orthopedics, and the x-ray confirmed that his right leg bone is completely healed. It now looks like a solid bone from hip to ankle, with the floating fibula kind of ending somewhere above where a knee would be. I’m not sure what you would technically call this bone, since it’s both a femur and tibia. My sister Joannie recently dubbed it a femibia, so I think that’s what we’ll call it!
John Paul has completely recovered and adapted to his new leg now. He hops around like nobody’s business and you’d never even know he had had it any other way. He still has the scar, of course, and probably always will.
In other news, probably more of note, we saw a developmental pediatrician recently which gave us some professional confirmation of what we had been suspecting for a while now. He performed a few intelligence tests to see how John Paul’s neurological development is going and assessed his speech.
He held up a paper with about 8-10 pictures on it: a dog, a flag, an apple, a star, etc. John Paul got almost all of them right. After about 8 correct answers, he missed identifying the word “leaf” – and I’m sure it’s because he just doesn’t know what a leaf is yet- So he pointed to a picture of a purse (which he wouldn’t know either – in fact, I think my 5 and 7 year old boys would have trouble identifying a purse). Anyway, the doctor was very pleased with him.
The second test was a puzzle with circle, square, and triangle pieces. He took the pieces out, held the circle up, and asked JP to point to where it should go. JP went one step further and took the piece from the doctor’s hand and placed it right in the circle hole. He also did the same for the square and triangle.
The real kicker was the next test – the doctor took the pieces out, flipped the puzzle around to see if he could put the pieces in in reverse. And John Paul didn’t even skip a beat. This test in particular demonstrated that he can perform tasks appropriate for the brain development of a 30-month old.
It was great news!
The not so good news is that his speech development is nowhere near where it should be. He recommended intensifying speech therapy to 2x/week instead of 1x/month, which is what he had been getting. I had actually already been consulting with his therapist to increase the frequency of her visits anyway, so his assessment confirmed what we had already been suspecting.
His PT and speech therapist have suspected this for some time, but have been reluctant to make a positive diagnosis because of his age (up until now he was too little for us to be sure that he understood us) and his personality (he can be a stubborn little bugger and simply not do things we asked him to do because he didn’t want to). Not to mention that my kids have all been kind of late-talkers. Sam didn’t start talking until he was 3 (and now he never shuts up!haha)
But now that the DP has given his opinion, they theorize that JP might have something like Apraxia, which has to do with how the brain works to move the muscles of the mouth to form words. It’s caused by injuries to the brain like the one JP suffered.
The doc and John Paul’s therapists are confident that with intense therapy he will be able to learn how to speak. In fact, now that they can pinpoint the problem and why he has a speech delay, they can treat him more effectively because there are specific strategies you follow to treat this type of disorder.
We will see Dr. Norwood again in the spring so he can see if there is any progress. Needless to say, JP’s ability to speak will be VERY IMPORTANT for him in the future. There is a wealth of adaptive technology that he can use to his advantage – voice-activated gadgets, dictation programs, etc. And his frustration levels will be high enough without having to add to them the frustration of not being able to express himself through speech.
So, if you have a prayer to spare you might offer it up for this intention! John Paul is such a joy, despite all of these obstacles he has had to overcome. He makes up games with the other boys. He loves to watch little shows and thanks to LeapFrog, has started to learn letters of the alphabet. He loves music and often dances and hums along with it. Like a typical 2 year old, he throws a lot of tantrums and has become an incredible picky eater and throws food all over the floor.
But for the most part, he is a happy kid and loves life. And life sure is a happier place with him in it!