Week 103 - Happy Easter

Working on the crafts our neighbor Carol brought over!

Ryan's finished products; he was so creative and patient!

Ryan's tooth is growing in, slowly but surely

Making dough with Grandma Millie... homemade raviolis!

Coloring Easter eggs

Planting seeds for watermelons and cucumbers

Ryan making his GFCF pepperoni pizza

Making pizza for the grandmothers

Ryan wearing his pirate hat Grandma Jeanne brought from Disney World

Fishing

Having fun on papa's swing

Easter morning

Ryan's GFCF Easter cake

 

Waiting for their new playmate to arrive!

Besties!

Easter egg hunt

Just as we were finishing our outdoor egg hunt, my dad's friend stopped by with a little boy, similar to Ryan's age, and Autistic as well.  Ryan did not hesitate one minute when I asked him to take some of his eggs out of his bucket and rehide them for the other boy to find.  Ryan even ran around with him encouraging him to look in different places to find the eggs he had hidden.  All four kids eventually started taking their own eggs, hiding them for this little boy, but it seemed like Ryan was the first to understand what the adults were trying to quickly do and he set a trend of acceptance with the rest of the kids.  It brought tears to my eyes to watch as these children, ages 4 to 7, gave up their prizes to make another child happy.  I was one proud mom and aunt!

DC

Week 81

Happy Halloween and Happy Snow Days!

We were able to take the kids out trick or treating to a few houses while it was still light out and before the real cool chill set in.  Ryan ate a couple of pieces of candy that evening but happily packed the rest into a brown paper bag to bring into school to donate.  His school was collecting kids' Halloween candy as part of a healthy initiative and the candy was sent overseas to our troops.  By the way, it had to be in a brown paper bag because that is what Mrs. Allen held up to show the kids as an example.  I know this because we happened to be in the classroom the day after Halloween. 

With all of the snow and power outages in the area our schools were closed on Monday, 10/31.  Ryan went back to school on Tuesday, but Phil and I had another snow day.  We were grateful to have the opportunity to volunteer in Ryan's classroom for their postponed Halloween party.  Ryan was so excited to see us there.  The kids made some crafts and enjoyed the food sent.  Ryan of course wasn't able to eat the cupcakes so I sent in one of his special cupcakes.  He ate this first, and also ate some of the fruit and vegetables the other kids were eating at the party.  Then a mom walked in the room with cupcakes for the kids and Ryan was already finished with his.  But his teacher distracted him by giving him a special job to do.  He had to help count the candy corn in the jar that the kids had took guesses on.  Then he got to deliver the prize to the winner.  Phil and I were so happy to be able to volunteer since we will be working during the other parties this year.  Here are some pictures of Ryan doing his crafts.

And speaking of crafts, Ryan also worked on his November Family Project at home that evening.  We had to decorate a turkey in a disguise.

The next day Phil had to go back to school, but I was on my 3rd snow day.  Since Ryan was Star of the Week in his class, I went in to be a guest reader and read a book that I read to Ryan at home.  He was excited and surprised to see me in his classroom a second day in a row.  Julia was excited also, as I picked her up from preschool and brought her with me so that she could see Ryan's classroom.  That evening and the next morning we had to prepare Ryan to not expect any of us in his classroom on Thursday!

Ryan had another soccer game this weekend and was super excited to see Uncle T arrive with Amelia and Alyssa.  No goals were scored by Ryan but he had fun.  Later on in the afternoon the kids had fun at the playground.

You may recall from a blog post in September that when Ryan met with Dr. Cowan he was diagnosed with Systematic Pragmatic Language Disorder.  This was certainly not a surprise to us, or probably anyone who has a conversation with Ryan.  All of his speech and language tests score low in this area, and each of his teachers' reports over the years mention that Ryan has difficulty with the pragmatics of language.  We don't believe the school supports this area of weakness but now that they have had a chance to pull out all of the kids for routine speech screaning we will be in touch with them to see what, if anything, can be done to help Ryan.  We are not expecting much, and we may even need to request a meeting to update his IEP with this new diagnosis.  Our next step will be to contact our insurance company to see how many sessions, if any, are covered if we hire a private speech therapist.  Friends of mine who have done this for their own children have had 30 sessions per year covered.  Then we'll have the difficult task of finding a good speech therapist that would be willing to meet with Ryan at his after school program or at our house to provide him with sessions.  If anyone has any insight into this, please share!

Below I've provided some information gathered from the SLHA (Speech-Language-Hearing Association) website if anyone would like more details about Ryan's difficulties with the pragmatics of speech. 

An individual may say words clearly and use long, complex sentences with correct grammar, but still have a communication problem - if he or she has not mastered the rules for social language known as pragmatics . Adults may also have difficulty with pragmatics, for example, as a result of a brain injury or stroke.



Pragmatics involve three major communication skills:

1. Using language for different purposes, such as

-greeting (e.g., hello, goodbye)


-informing (e.g., I'm going to get a cookie)


-demanding (e.g., Give me a cookie)


-promising (e.g., I'm going to get you a cookie)


-requesting (e.g., I would like a cookie, please)


2. Changing language according to the needs of a listener or situation, such as


-talking differently to a baby than to an adult


-giving background information to an unfamiliar listener


-speaking differently in a classroom than on a playground


3. Following rules for conversations and storytelling, such as


-taking turns in conversation


-introducing topics of conversation


-staying on topic


-rephrasing when misunderstood


-how to use verbal and nonverbal signals


-how close to stand to someone when speaking


-how to use facial expressions and eye contact

These rules may vary across cultures and within cultures. It is important to understand the rules of your communication partner.


An individual with pragmatic problems may:

-say inappropriate or unrelated things during conversations


-tell stories in a disorganized way


-have little variety in language use

It is not unusual for children to have pragmatic problems in only a few situations. However, if problems in social language use occur often and seem inappropriate considering the child's age, a pragmatic disorder may exist. Pragmatic disorders often coexist with other language problems such as vocabulary development or grammar. Pragmatic problems can lower social acceptance. Peers may avoid having conversations with an individual with a pragmatic disorder.
 
I will end with a link to a video called The Greater Good.  It is a documentary that weaves together the stories of three families whose lives have been forever changed by vaccination.  It is over an hour long but so worth watching, especially if you have young children or are planning to have children.  Thanks, Jimmy, for sharing it with us!
 
DC

Week 77

So it is Sunday evening and we're in Pittsburgh.  We had an extremely busy weekend and the last thing I wanted to do was sit here and type this blog.  In fact, I just finished telling Phil that we really need to stop writing the blog because most weeks it tends to send a lot of stress my way... worrying if I have taken enough videos and pictures and straining to remember what actually happened that we want to share with everyone.  At 9pm I begrudgingly sat down to download pictures off of my camera and write week 77's entry.  Editing the pictures took about 15 minutes, and stalling to actually do the writing I checked my email.  And wouldn't you know I received an email from a former student and she mentions how she still reads the blog and is happy to hear about how Ryan is doing.  Gosh, what timing for that email to come when just an hour ago I wanted to give this up altogether.  I guess we can't do that just yet (but be prepared because it will happen in the foreseeable future!)  But not tonight, so here it goes...

Let's start with Pittsburgh since I already mentioned we are here.  We visited Phil's sister and her family for the weekend.  We feel very lucky that the kids are for the most part patient in the car since it is an 8-hour trip to get here.  We've had a busy couple of days.  Here are some of the pictures highlighting our visit. 

The kids playing together.

Shucking corn with Uncle Chris

Ryan, Kate, Julia, and Megan... they love spending time together!



Ryan with Aunt Anne, his godmother.



At the park.

Even before our trip to Pittsburgh, this week was a busy one.  Ryan has been getting more homework and it can sometimes be a struggle getting him to sit long enough to do it.  It sometimes takes a lot of bribing.  And on top of the homework, when he doesn't cooperate and finish his work in school, that gets sent home as well for him to finish as homework.  One of his assignments this week was on the "fun" side.  It wasn't writing letters so Ryan was a little more cooperative.  We needed to decorate a pumpkin to put up on their classroom's pumpkin patch bulletin board.  So out came the box of craft materials and I was able to get Ryan to work on his pumpkin for about 15 minutes.  He was very independent and wanted to do all of the cutting and coloring himself.  He was patient and he did a good job.  I was impressed!  But I could also understand why he may not finish activities at school.  If he doesn't stay completely on task he won't finish because he is on the slow side cutting, writing, coloring, etc.  I'm sure with time the speed will come but for now he's trying his best to be neat and accurate, and he's come along way in the past month. 

And there were more crafts to be completed when our neighbor Carol brought the kids a bucket full of Halloween gifts.  Here Ryan is making a haunted house.  He looked at the picture on the cover of the package and carefully replicated it.  Again, he was a very independent worker and he sat for about 15 minutes to complete this task. 



My friend, Bridget (one of our avid blog readers!) alerted us about the Theatre Development Fund piloting the "Autism Theatre Initiative", the first ever autism-friendly performance in Broadway history.  That evening we heard all about it on a Nightly News segment.  My explanation would not do it justice, so I'm just going to give you the link to the segment:  Autism Theatre Initiative


Recently I received a link from my mom and friend Marni, two more of our avid blog readers, about a heartwarming story of a set of parents preparing their adult autistic son to be out in the world on his own.  Here's that link: Seeking a Place in the Adult World

Well, that is all for now.  And don't worry, when we are ready to end our journey of blog writing we will give advanced warning!

DC