Tuesday, January 27, 2009

Jonathan's birthday/Christmas in Columbia

I would just like to point out that it has only been two weeks since my last update - yes! My mom sent us a CD of the pictures she took at Jonathan's birthday and Christmas, both of which we celebrated in Columbia. That was motivation to update the blog!

Since last I blogged, Jonathan has continued his wild streak. He was a wild man at Christmas and I chalked that up to travel and being out of his own environment. He did well the first two weeks back and the last two weeks have been quite crazy. He supposedly is doing fine at Hand In Hand (where he attends on Tuesdays and Thursdays) but I have had bad reports the last two weeks at the Bell Center - he has hit his volunteer, hit other children, etc. At home he has been hitting us, pulling hair, tearing things down, turning over chairs, eating his foam padding on his pack 'n' play, destroying his brother's "art," and throwing toys. I am not sure what the catalyst is or has been - not getting enough attention at home? the upcoming baby?

A friend who has a child close in age to Jonathan with DS hired a speech pathologist to come to her house last fall to work with their daughter, in addition to all the other therapy. Every time I spoke with a speech therapist Jonathan has worked with, they would say he was doing just fine for him. I called the therapist of our friend and she came two weeks ago Wednesday. Not only is she a speech and language therapist but she also works with kids whose behavior issues stem from speech problems. My suspicion has been that Jonathan is frustrated and is acting out because he cannot communicate verbally. I have noticed a rise in aggression each time he adds more words to his vocabulary. The woman who came to our house said she could help Jonathan - her first visit was to assess if he really needed help (since the other therapists we have worked with said he would not benefit from outside help). She is coming again tomorrow.

Jonathan is saying (or signing) drink, water, eat, dinner, lunch, TV, movie, book, Curious George, Thomas, Woody, Buzz, open, close, door, car, three, downstairs, upstairs, teeth, bath, shower, toys, couch, bed, table, Mama, Daddy, Jackson, Nana, Pops, Grammie, Grandpa, Gigi, Gracie, swing, outside, slide, no, yes, ball, zipper, Doritos, chips, pretzels, ice cream, milk, popsicle, apple, banana, help, bowl, funny, cheese, Veggie Tales, music, sing, potty, poop (I know that is gross to some of you but he must get credit...), diaper, choo choo train, and so many more.

We had Jonathan's IEP meeting in December - our first of many. I used to teach and had sat in on many of them as the regular classroom teacher, never realizing I would one day be on the other end. So, it was an interesting experience. Jamie had no exposure whatsoever so he had more questions than I did. However, they were good ones because I did not think to ask them.

It was hard because the therapists used testing/evaluation methods to determine how much therapy Jonathan "needs." He does not qualify for PT even though he is not functioning like a typical child his age. Since he is fairly coordinated for a child with DS he can't have PT. In an evaluation for speech, he tested as being able to say/sign ten words or less. However, the words I listed above are not all the words he can say/sign and it was frustrating. His OT had similar scores for him and a plan for pottying and interacting with other kids.

Last night I attended a new parent meeting for parents with kids with DS and our speaker was lawyer. She had a lot of insight at to what our rights were as parents and the rights of our kids. She went over the laws for special needs - IDEA, ADA, and section 504. I have heard all that in education classes and as an educator but did not know the law. She mentioned that most special educators do not know the law either and it is up to us to know it and stay on top of our kids' rights. I felt overwhelmed because there was so much information and I began wondering if Jamie should have attended instead of me. Jamie has a real head for jargon - no matter what the business. He is a camellian - he fits in well and can adapt to any conversation - legal, financial, medical, another language, etc. I don't know what it is but it all makes sense to him.

Jackson continues to enjoy school. He doesn't look forward to going but is fine once he gets there. It still tears me up to drop him off and watch his little person trudge up to the door amidst all the other kids swarming around. I have a hard time not crying.:) He is still so kind to Jonathan despite Jonathan's rough treatment. Jackson helps Jonathan talk and acts as interpreter. They are both so encouraging to each other. We were playing outside with other kids one day and Jackson had to sit out and cool off for a few minutes - there was Jonathan right beside him, comforting him. Jackson does the same for Jonathan. I remember when we brought Jonathan home, thinking it wasn't the sibling we thought we were going to bring home for Jackson. Thank goodness we are not in charge - God knew who Jackson needed!

Jamie and I are gearing up for the last Mercedes Marathon where we will actively raise funds for the Bell Center on Jonathan's behalf. I am not running - I had planned on at least running the half if I wasn't pregnant. Since I ran in my last two pregnancies and miscarried in both, the doctor has advised me not to run now. While I am sad not to run for Jonathan in his final year at the Bell Center, I am grateful we have another person on the way! So, stay tuned for ways you can support us in our final venture!

Have a great week and thank you for keeping up with us!

Julie
juliewarren73@charter.net






Jonathan and his great-grandmother, Gigi.

Jackson, Jonathan, Mom's pudgy tummy, and cake.

Jonathan LOVES Woody the Cowboy from Toy Story (Doody) and so Mom had their favorite "Cake Maker," Mille Fore, make Jonathan this Woody pound cake. It was delicious!
All of us checking out the toys. Jackson has great difficulty when it is someone else's turn to have a birthday so he usually participates in the gift opening, if possible.
He got a toilet. He has shown tremendous interest in the potty - flushing it, getting the toilet paper, helping other people go, etc. He can go and will go for a treat - toilet paper!
Jackson, Julie, Jonathan, and Jamie at Jonathan's party in Columbia.
Grandpa ("Bapa"), Jonathan, and Grammie (also "Bapa").
Grandpa and Jonathan.
Jackson got a pizza kit from his Aunt Nancy. We made it for dinner the night we arrived home from traveling. The boy loves to cook!
Jackson and Daddy taking a rest out in the hammock in Grammie and Grandpa's backyard.
The Warrens at the Christmas dinner table.
Aunt Nancy (Grammie's sister), Aunt Betsy, Gigi, Grandpa, Mrs. Eddins (best friend of Grammie and now mother-in-law to Uncle Stephen), Aunt Jessica (Uncle Stephen's wife), Jackson, and Mommy.
Jonathan enjoying his chocolate dessert.













Tuesday, January 13, 2009

Miscellaneous Video Clips

Here are some additional video clips I did not include on the other blog entries. Again, I have trouble downloading them...

The boys love the Imagination Movers. In this particular song, they both show their moves.:)


At the end of this video, Jonathan answers "yes." He usually pumps his fist and kicks his leg along with a "humph!" sound.


The boys were playing on the slide together. Jonathan has worked hard to climb stairs and he shows no fear in coming down the slide.


Jamie and Jackson took off to start their first race together. I fought tears (no one saw it - I was cool) because I so badly wanted to run it with him.

Jamie and Jackson are at the halfway mark at this point in the race and seem to be doing fine.


This is Jamie and Jackson coming across the finish line of the Edgewood Turkey Trot, one mile run.


I surprised Jackson by picking him up from school and whisking him away to the airport in November. We called Jamie on the way and he revealed our secret destination - Disneyworld! Jackson was not too keen on the plane ride - a foreshadowing of the way he would experience the rides at Disney...

Jonathan's Birthday in November 2008

As I play catch up with pictures, I appreciate your patience. This program does not make it easy or quick to download pix and I often become frustrated!

We went to Disneyworld in November with Jackson and then came home to Jonathan's birthday the next week. We celebrated Jonathan's third birthday in SC with Grammie and Grandpa (I will post pix later when I get them). Grammie had a Woody cake made for Jonathan and he was thrilled. Right now he loves Thomas the Train and Woody. He says, "Dora/Gorah" for Thomas while pointing at his throat and "Doody" for Woody.

Lately, Jonathan has been saying lots of things, some we understand and some we don't. We read the same books again and again at night. Often, I pause to see if he will fill in the blank and he will with his own version of the missing word. Many times it occurs to me that he has been saying a certain word over and over again that none of us got. Once we repeat back to him what he has been saying, if we are affirming him, he rewards us with a big smile and cheer. Even though he is a wild man and can do crazy things, the "sweet disposition" that is supposed to accompany all people with DS does seem to be present in these moments. I think any other person would be pulling their hair out. He has tremendous patience with us. Thank goodness for his thumb, too. After trying to "explain" to us again and again what he is saying, he will give a little "hummpph" and stick his thumb in, letting us know he is done trying to help us.:)

Jonathan continues to do wild and crazy things. While at my parents' house for his birthday and again at Christmas, he raked his hand/fingers across table tops and countertops in an attempt to take down as many things as possible. He jumped up in the desk chair to swirl the mouse and punch as many keys as he could before being noticed. He jumped out of the pack 'n' play, pulled music off the piano, turned over the dog's water bowl many times, and went through the trash. He could also reach the fridge's water supply. So, if any of us forgot to lock it, he would reach up and tap the button you use to fill up your drink, sending rivulets of water down the fridge onto the floor and soaking his clothing. He loved it.

After Jonathan does something particularly devilish, he uses each index finger to push up either side of his mouth into a smile and laughs. I think he also says his version of "funny" and then I explain that "No, it is not funny. That was not a good choice." Blah, blah, blah.

For several months, we had difficulty with Jonathan in the mornings. He would produce something in his pants, dig it out, and decide to taste it or use it to decorate his bed. After searching high and low for onesie PJs for three-year-olds, we have not seen the natural artwork displayed lately.

Jonathan jumped out of his crib several months back. We dropped his mattress to the floor and took the front of his crib off. He could freely walk around while awake. He loves his bed so getting to sleep was not always a problem, although he usually needed at least one "talking to" at night. I would hear him around 5:30am playing in his room. Typically, he wakes after "producing" and just hangs out. But, since he had access to toys, he would play. If not that, he would pull out all of his diapers, remove all the wipes from the container and throw them around his room, and pull all of his shoes out of his closet. After tiring of cleaning this up, we moved his mattress and placed his pack 'n' play in the frame of his bed. He can still climb out but doesn't do it as much. To make the pack 'n' play more comfortable, my friend, Jayne, got a piece of foam sized to fit the pack 'n' play and covered it with a sheet. We did the same thing. Now, as I did this morning, I find the sheet pulled back, and bites of the foam missing. If we had named him William, we could be calling him "Silly Willy" or "Our Little Billy Goat."

Jonathan's eating is better. He still spits things out, but rarely. Pasta seems to be a texture he still doesn't love. He likes carrots, pretzels, chips, goldfish, cereal, yogurt, ice cream, cake, apples, sandwiches, and most meats, including shrimp. We force many things and then reward him with something else.

I would have to say the crazy things have toned down a touch. We have to keep things out of his reach and we continue to childproof things we did not with Jackson. I noticed him opening the fridge downstairs and scolded him. Then I found him climbing in which unnerved me. What really put me over the edge was when I saw him climb in and shut the door. Jamie commented that he didn't know we would have to work so hard after his heart surgery to keep him alive!

Jackson is still enjoying kindergarten. I made the mistake of telling him that it was seven hours long. So, he continues on a weekly basis to lament to me that he was at school for "seven hours". He still refuses to engage in organized sports. We tried soccer the fall he was four, but he didn't like the rules.:) Since then, he does show interest in gymnastics, which we may try. According to our brother-in-law, gymnastics develops coordination and that might be a good springboard for other things. Mostly, he enjoys coming home to play with Legos and draw. He also is great about playing with Jonathan. I often referee fights, but they are mostly tame.

Jackson talks very loudly these days. I think it is because he is used to talking over friends at school or over Jonathan's screaming (which doesn't happen much anymore, thank goodness!).

There is a talent show coming up soon at school. Another child in Jackson's class wants to participate so his mom is getting an act together for the boys in the class. I asked Jackson if he wanted to participate and he said, "yes," and that he had prepared a song. I said, "Really? Sing it for me." He paused and then said, "Well, it is about Star Wars and there is actually a lot of talking at the beginning and then I get into the song part." I said, "Okay, well, tell me how it goes." He took some time and then said, "I forgot." I explained to him that this was James' idea and Jackson was just asked to dance, not sing. Was he okay with that? He said he was.:) We shall see!

Thanks for reading,
Julie:)
juliewarren73@charter.net

Jonathan LOVES Thomas the Train. I kept it simple and used an actual train to protect everyone's eyes from my heinous attempts at sculpting Thomas on the cake.
Jonathan blows without spitting. That is a blessing.
He loves ice cream and has made up his own sign for it. He make the same sign as he does for "milk."
Jackson loves Gracie. We had to keep an eye on them...
A Thomas book! He pronounces Thomas as "gorah" while pointing at his throat. We know not why.
Jackson has a very hard time when it is someone else's birthday. For one, he loves the spotlight and has difficulty sharing it. Two, he wants a new toy as well. We have to give him a pep talk before birthdays and explain the purpose in being glad for someone else, needing to get alone if he cannot behave properly, etc.
Jonathan was making up with Gracie. He hit her and this is his way of apologizing. Notice how sorry he looks.
This is one of Jonathan's favorite activities - jumping off the ottoman/coffee table. We do not encourage it but he and his brother love it.
Our dinner of chili before the opening of presents.
Nana, Jonathan, and Pops.
Jackson using Jonathan's new bat as a guitar.
Our family with both boys thumb-sucking.
A new trampoline! While this is a great toy, it is a good motivator for Jonathan to bend his knees.
Jonathan loves to play baseball. He and I usually hold the bat together while I toss the ball and help him hit. We thought a tee would be better. It also will help him build up his chest and shoulder strength. Funny how we never thought about these things before!

Friday, January 09, 2009

Happy New Year!

I have many pictures to upload and stories to tell. Unfortunately, the part I purchased to make it easier to download pix from the camera we purchased in August is not compatible with our computer. So, until I figure it out, this is what we sent out for our Christmas card...




Lessons Learned in 2008…

Parents must pay attention in kindergarten
Bath time can serve as a confessional
Pictures of robots glued to walls do remove paint
CD and DVD players do break when overused
Snow globes do not bounce
Poison Control and doctors’ offices can be close friends
Swimming lessons can leave scars
A “love pat” can be taken too far
Swallowed Lego pieces must be retrieved in ER
Playdoh is edible
Ear tubes expire and must be removed
Open heart surgery is a distant memory
Books don’t float in bathtubs
Little stomach flu patients can pull all-nighters
Some toys do not survive dishwasher cycles
Action figures can withstand heat of dryers
Ovens open without help from grown-ups
Wipes and diapers become toys when bored
Refrigerators are not good hiding places
“My brother ate my homework” is a valid excuse
Children have excellent memories
Jumping out of cribs can cause head injuries
Chests of drawers can fall on small children climbing them
Syrup and peanut butter do not remove easily from hair
Phones do not belong in the trash
Classroom bullies can live at your house
Not every child enjoys Bible stories
Sleeping in and privacy are overrated

Counting it ALL joy,
Jamie, Julie, Jackson, and Jonathan
www.thefourjs.blogspot.com