I Want Cookie

Update on the previous post.  

We're working on him using a sentence to express his needs.  "I want...."  

It's not that he's never put three words together, but other word combinations are him repeating things from stories or repeating phrases the boys use.  For example, "We'll be back, right after these messages."  Now granted, someone other than a family member might have no idea what he's saying, so I don't know if it counts.  

He's had success a few times in the last couple of days with his "I want..." sentence.  The first one he said WITHOUT prompting:  He came up to me in the kitchen and said with no hesitation between the want and the object, "I want cookie."  And of course, he got a cookie...and lots of hugs and praise for using words! 

Another one he said unprompted two nights ago:  "I want pie."  And the one last night:  "I want cake."  Notice a theme?  

The pie one I was quite impressed with.  He had helped me make a strawberry banana cream pie last week (for our anniversary...22 years!), so he did have that for a snack two nights in a row,  but when he used that sentence, it was already gone. 

And the cake, John's birthday was recently; it's not like we have pie and cake all the time at our house!  ;)

Still working on making it consistent.  He gets anxious when he knows he "on the spot."  

Good stuff

Communication

One of Evan's first form of communicating that he wanted something, such as juice, a snack, to watch a favorite commercial again, etc., was signing "more."  It worked for so much.  For something on tv, it's still what he'll sometimes do.  For juice, he moved on to saying "juice," or sometimes just "please" when it's obvious what he wants, or just handing me the cup!  He still tries the "just handing me the cup" trick, but he's not getting away with it so easily.

We're working on making a sentence.  

I want juice. 

 Yes, having the please on the end would be great, but we're not there yet.  We're still working on the three words.  How it's been working is he'll come up to me, hand me the cup, I'll say "what do you want?" or "what would you like", and he gets all nervous with a huge smile while giggling.  

Then I say, "Say, 'I want juice.'" More giggling, but eventually, he'll say, "I want."  And then I say, "What do you want."  And then he'll say, "juice."  

Yesterday, he did come up to me without prompting and said the "I want" part.  This morning after being prompted, he said, "I want," and before I could ask the question, he said, "What do you want?" ...understood by a trained ear.  :)  

We'll soon have those three words said together to make a sentence. 

He's a Reader

Before Evan was born, I had decided that no matter what that X chromosome looked liked (we didn't know until a year old), this child would be a reader.  I wanted him to want to read.  

Some of the "tools" we've used to help accomplish this:

This has been a favorite toy for a few years.  When he went through what seemed like a never ending stage of waking up at night, he had access to this--the letters light up.  Sometimes he used it, sometimes he didn't.  It's a great one!

image from amazon.com

Here's another good one; it's at grandma's house right now.  He likes the first one a little better (and so do I), but it's still a good one.

These letters were VERY popular with him for a while.  We started with him only having access to a few at a time at first, because if not, it was overwhelming and they would all get thrown on the floor. Now that we have two, he'll put matching letters in at the same time to hear the jingle simultaneously.  Or sometimes, he staggers the placement of the same letters...it sounds pretty cool, too.

And I can't leave out Starfall.com. 

 I think we started using that when he was two?  Maybe sooner.  He would sit on my lap, and I would click on the letters.  He soon started pointing to what he wanted to hear.  And then as he was able to start verbalizing letters, he would say the letter.   It would be me who would have to say, "All done," because I'm not sure how long we would be on the computer if I had waited for him to say it.  

And now there's the iPad.  We have several stories on there. With many of them, the words highlight as they're being read.  He can also touch the word and have it repeated as many times as he wants, which he loves to do.  

BUT,

this all started with the best reading program out there:

A book.

I started reading to him the day I brought him home from the hospital.

I read to him, a lot.  Some days, especially on weekends and in the summer, it probably adds up to hours of reading.  When my mom watched him, I asked her to read to him.  He's always had full access to books.  Granted, giving full access to books meant he often had books...all over the floor in his bedroom.    And yes, he went through a stage of tearing the pages, sometimes one, sometimes multiple, sometimes on purpose, sometimes not.  This behavior most certainly wasn't encouraged; he would get a stern talking to when this would happen. 

And then if it was salvageable, I would get out the clear packing tape.  This tape was also used for the corners of the pages.  He had/has this thing about gently biting his thumb while having a corner of the page in/near his mouth while reading.  I found that this tape came in handy for preventative measures, too, for some of his favorites; I just taped the edges of every page!  Some of the favorites, like the animal babies series I got for him when he was 6 months old, ended up having to be replaced.

Amazon.com

We have books...everywhere. He brings books with him when we go places.  When we read, I point to the words.  We point to the pictures and talk about them.  I ask questions about the book.  Does he answer?  Sometimes, sometimes no.  But is he thinking about the questions?  Yes.  Is he learning to think about what he's reading?  Yes. 

And now at five years old, I'm starting to see the results.  He   has many words memorized.  Animal ones were the first, but now he's also started to recognize other words, like "but;" he knows the word "but." He knows the word "the." I haven't quizzed him on what words he does and doesn't know; they're are others.  Those two just stand out at this moment.

He's started to attend to the first letter.  I'll sometimes stop and ask him what the word is.  He'll sometimes get the first sound or even say (or attempt to say) a word that starts with that sound.  Yesterday, we were looking at one of his animal books...encyclopedia type...and there was a picture of some colorful, different kind of vulture.  He looked at the paragraph next to it, and he found a word a couple of sentences in, "perfect."  He pointed to it and said "parrot."  

He points to the words when he "reads."  When I read to him, he often asks me to point to the words--if I start reading and I'm not pointing, he'll start running his finger under the words and look at me.

And I'm loving this!

So I'm off to read some books, because the answer to the question, "Do you want Mommy to read to you?" is almost never "no."

His grandpa would be proud!

Evan on his 5th birthday.  He's recently got to the point of being able to swing without me standing right there in preparation of him letting go.  Yeah, he did fall a couple of times in the process.  Now we're working on kicking those feet.

A Thomas Fan

Kyle has always been a Thomas train fan.  Evan has too, but at first, he couldn't play with them because he couldn't handle the excitement.  Kyle would have trains going in his room, and Evan would purposely go to his room to see them, only to stand there and cry.  

Gradually, he got to a point where he could play with them for a while before getting upset.  Then, he went to not wanting anything to do with them again.  Well, he's back to being a fan, and this time I don't think there's any going back. 

But that's not really what this post is about.

Evan ASKED for something!!!!  For a while now, he's been asking for things like juice, milk, cookies, blankies, etc. by saying "Juice?, Milk?" etc.  But this was the first time he's asked for a toy he wants from the store!  

He recently got a new train for his birthday, and whenever you buy a train, you get one of those inserts showing other trains.  Kyle used to carry them around all the time so he could constantly let us know who he needed next.  

Tonight, Evan came up to me with the insert, pointed to one of the trains, and said, "Want Percy?...Cow?"  (it's Percy pulling a cow in an open car--two of his favorites together, a train and an animal)

YAY!!!!

So obviously, guess what he's getting as soon as I find it???  

Spots

A little over a week after our trip, by airplane, this is how Evan woke up one morning.  Face, back, stomach--covered-- and a few on the arms and legs.  I brought him to the doctor, and because of his other symptoms, he thought possibly measles.  So we went for blood work, and a couple of days later, we find out (after a couple of phone calls)...that it's inconclusive based on that test.  This is because he's had his first round of mmr, so he would have certain levels of what they're looking at.  I think, from the last I heard from the doctor, he'll be having another test on Monday.  

At this point, although I'm curious as to what caused these spots, I'm just thankful that he's feeling much, much better now.

Airplane/I'm Kind of Tired

We got back yesterday from my Mother-in-laws memorial service; she passed away from cancer in January.  Sometimes it's still hard to believe all the losses we've suffered in the last year and a half.  We miss her...

Because it was going to be a quick out of state trip, we decided to fly by plane. John, Chelsey, and I do our share of traveling by plane, but when it's with the boys, we pack up the mini-van.  This was the first flight for Evan, and the first time for the older two since they were around 3 and 1 (AWFUL experience).  

So naturally, I spent several days preparing and worrying  (just a bit) about how this was all going to go down.  This is what I had planned for:  Matt was going to have an terrible time going through security, Matt probably wasn't going to be too happy about the plane, Kyle would go along with everything fairly easily, and Evan, oh Evan, was going to be a handful.  So I spent time with Matt the day before talking about what was going to happen at the security check.  I spent time telling Evan all about getting on a plane and going up in the air.  And Kyle, well, he knew the general plan.

And this is what happened:  Oops, forgot to tell Evan about the shuttle ride from parking lot to airport, although, really, I don't think it would have made a difference.  He wasn't happy. And I thought, 'Here we go.'  But once we got in the airport, he stopped screaming.  And then, he discovered moving walkways, and I think that set the tone for the rest of his trip.  

Security:  We gave them a heads up, and the first guy, a 74 year old man (he told us), the one we gave our ID's to, was the kindest, gentlest, sweetest man.  He told us how proud we should be proud of our family.  Sometimes people don't realize how much of an impact their words can have--the positive kind of impact.  Then it was time to take off our shoes and go through the detector.  And as predicted, Matt's anxiety started up as soon as the shoes started coming off.  And on his way through the detector, he slammed both sides of it with his fists.  The high point, kudos to the security people; they were VERY understanding.  Even though our kids can be so good at blending in at times, this was one time when it was so important to make sure all were aware of the situation, just in case.  To sum up Matt's story, he was great the rest of the trip.  He LOVES flying.  He especially liked that they came around with snacks and beverages.  He did much better going through security on the way home--no incident.

Kyle:  He was good, he was cooperative, but.....

Okay, so I thought he would be fine on the plane.  And for the most part, although he didn't like it, he was "fine."  Except the moment the wheels left the runway on that very first flight.  

He let out a scream unlike no other. 

 And you know, although I couldn't see too many of the other passengers reactions, I didn't feel like people reacted.  I'm guessing they did, I mean, everyone heard it, but I didn't even notice the ones near us turn around.  My reaction?  I laughed.  He was sitting behind me, so he didn't see me laughing, but really, what he did is what I have felt like doing on some flights.  And then there's the landing.  "We're all going to die!!"  Once again, maybe not all, but many people probably heard this.  

So for the next flight of that day, we rapid-fire quizzed him heavily on NASCAR drivers, their car numbers, crew chief, and sponsors as plane was going down runway.  It helped greatly to keep his mind occupied on something else.  The flights home went smoothly, although he clearly wanted to go home, and his topic of conversation all through those flights was finding my caravan (parked at the airport).  

Then there's Evan.  He surprised me in the best way.  He likes flying.  He did so well, of course, that's being said in a relative manner.  For our first flight, we had to sit on our plane for almost an hour while they waited for an available gate.  Thank you iPad and books.  By the time we got on our second flight, which was delayed, he was tired.  After we got up in the air, he kept himself entertained by buckling and unbuckling his seat belt.  He's always had a thing for buckles and latches.  Yeah, things were going good until...

the flight attendant who wasn't on duty, she was sitting behind us, apparently got annoyed with the "clicking" noise of the seat belt.  (Oh yeah, when we were doing rapid fire questioning with Kyle, I could see her shaking her head).  SO, she gets out of her seat and says to me, "You realize that's not a toy, right?  You're going to need to make him stop playing with it."  I think what bothers me most is the way it was said. I mean really, I know it's not a toy. I just gave an awkward smile; she caught me off guard.  So, I made him stop playing with it.  And although I felt badly about how upset he was for at least the next half hour, and I felt badly for the rest of the passengers, I just couldn't help thinking, "There, you like this better?"  He ended up falling asleep near the end of the flight.  His return trip went well, loved the Detroit airport and all its moving walkways, escalators, fountain, and elevated tram.  Oh, yeah, and he had a fever that morning...Friday, too.  Thankful for tylenol and motrin, and he's off to the doctor in about an hour.  

(Hmm, should probably read things a little closer before hitting "publish post."  I don't know how what I know I typed disappeared.)  At the first airport of yesterday's trip, we sat besides a woman who was looking at Evan and me while I read to him.  One might say she was "staring," but I didn't think it was in a negative way.  She asked how old he was.  I think that's a common way for someone to say, "Hey, I noticed something is perhaps a bit different about your child, but I'm not sure what, and I'm not going to ask, so I'll ask how old he is, hoping you'll tell me more."  Because really, is there a way to ask about the behaviors of someone's child?   Before I even said the words Fragile X...I had only got to the part about him having delays... she said she was a teacher and was wondering if he was on the spectrum.  And you could tell she kind of was hesitant about what she had just said.  I told her the very, very basics of Fragile X and gave her the web address for the foundation, because like so many, she had never heard of it. 

So yeah, overall, good trip, but I must add that I was in bed by 8 last night.  I never go to bed that early.

Maybe I'm Over-Thinking It

I tend to like to think things through, probably to an extreme extent in some cases.  But some things do deserve that thought time, such as Evan's transition to kindergarten next year.

Yes, my little boy is going to kindergarten.  I know, it's the cry of most parents, but I still have to say it, How did he get so old so fast!?

We had the conference last week, and I thought I knew what I wanted heading in.  We have two elementary schools in town; I work at one of them, and he goes to preschool at the other.  The one I work at is the one that he should attend for kindergarten based on where we live.  But, the other school has more special ed. options.  So, a couple of weeks ago, I visited the classroom at the other school that I was fairly certain was the one for Evan.  I observed for about an hour, and my eyes watered up as I sat there thinking, yep, this is the right place for my son.  Low number of students, mainstreaming, swing in classroom, sweet sweet teacher, etc.  Yep, the right place.

Day of conference, I'm sitting around a table with the people I work with now and people I've worked with in the past.  I'm really not sure if that is better or worse;  I'm thinking it's just different.

Lots of positive things said about Evan's recent progress which we're seeing at home as well...good stuff.   

 So in a nutshell, there were 3 choices presented.  The most restricted class was eliminated from the get-go; we all agreed that wouldn't be the appropriate place (although I LOVE that teacher!!!).  So it was a choice of the classroom I visited at the other school and the developmental kindergarten class at our school.  And there seemed to be some leaning towards the latter.

Whoa. 

 I hadn't given that second option much consideration before the conference.  Hmm.  Maybe not such a bad idea.  When it was talked about, I  started to believe that maybe it could work...an aide, small group, a great male teacher.  Then the mother in me started thinking about, well, maybe it will work this year, but what about next?  And maybe there won't be enough support.  And maybe it's not such a good idea for him to be in the same building as me.  And and and.

So, as of today, I haven't signed yet, but I'm 99% sure that's the direction we're heading.  Yeah, 99.1% sure.

What's holding me back?  Among other things, I think the biggy is my desire to protect him...have him in an environment where he is a little more sheltered.  Have him somewhere where I don't see everything. 

Ugh ugh ugh.  

Yes, 99.2% sure.

I Hope You Get This

Dear Costumer at Local Restaurant,

Where do I begin? How about a little background. My 3 boys, 19, 17, and 4 have Fragile X Syndrome. Never heard of it, huh? Well, I understand; we hadn't heard of it either until our oldest son got his diagnosis 16 years ago.

Yes, raising ANY child is challenging. I totally agree! Like you said, we all have our problems.

You see, I think the reason I so quickly got within inches of your face to explain our situation after you offered your "advice" is because it's been building up inside me for 16 years! Crazy, right? I also had to get kind of close because it was loud in there. How ironic that I say that, isn't it, because yeah, my son was greatly contributing to the volume in the there.

Let me try to explain. Our 4 year old son sometimes has trouble diverting from the routines he is used to. We had to wait for our table, and he was a bit confused by that. Just going into a restaurant is very difficult for him right now (the noise, the odors, the people, etc); having to wait for our table was more than he could handle tonight. Like I told you, he was adjusting. You probably noticed he was doing much better after we got a table. (I'm sure you noticed; we had such a great view of each other.)

Back to the "building up inside me for 16 years." You see, you're not the first person to offer "advice" that's been clear enough for me to hear.

You are the second.

Yep, 16 years, and you're only the second person that has given "advice" to our family. Have others said things over the years? I'm going to guess, yes, but they made the decision to give their "advice" under their breathe, or maybe they just kept it in their head, so that I couldn't hear it. I respect that, but would appreciate it even more if people could find more constructive things to do with their time than to judge the situations of others.

And, believe it or not, we've had people give us compliments about our kids.

I know, you're in awe.

That first piece of "advice" I overheard? I was in line at large store, the kids were approximately 5, 3, and 1 (we also have a daughter, she was the 5 year old). As we were going through the check-out, both of the boys were in the throws of a complete meltdown. How I even heard the "advice" the woman behind me in the check-out said to the other woman, I'll never know; my kids were so loud! I'm guessing she wanted me to hear it, so she said it in a manner that would put her voice over that of my boys. Her words have stuck with me all these years:

"I hope she doesn't have any more kids; she can't handle the ones she has!"

Yes, I remember it verbatim. And I think the reason for that is that back then, I was weak.

And I agreed with her.

Well, not really...at least not always, but in that moment I did. So instead of saying anything to her, I brought my screaming kids to the van and cried along with them.

And to this day, I wish I could chat with that woman, face to face...

Ok, so tonight. Yes, he was loud. I agree. Yes, I needed to bring him "out those doors." I was planning on heading that way. Having to chat with you ending up delaying that happening.

Oh hey, guess what, Ms. Customer!?

It's Autism Awareness Month. Many children with Fragile X have autistic characteristics. Some have autism.

Consider yourself a little more aware about hidden disabilities now than you were before you walked into that restaurant.

You're Welcome!

The Snowy Day

Another snow day we'll have to make up, but I'm okay with that. Today has been a GREAT day so far!

This winter, we've had a fair amount of snow, but Evan hasn't wanted to participate in any snowy outdoor activities. We had attempted outdoor adventures a couple of times, but he only lasted a few minutes each time, before he would let me know that he was done.

Ironically, his favorite book right now is The Snowy Day, by Ezra Jack Keats. He, my daughter, and I all have it memorized. It made me kind of sad that he loved the book so much, but how could he fully connect to it, when he hadn't experienced those basic winter activities?

So today, when we were fortunate to have this snow day from school, I decided early on that we were going to live that book today.

Because he slept in this morning, when he woke up, it was already light out. I went into his room to greet him, and after our "Good Morning!" I carried him to the window and started reciting the first page of the story when the little boy is waking up and looking out his window and seeing the snow, only I inserted Evan's name. Big smile on his face.

Midway through the morning, I excitedly explained to him how we were going to go outside, including the different events from the story. He respectfully disagreed, well, okay, he whined a bit, but I kept the enthusiasm up.

And here's the rest of our story...

Evan and his mom headed out the door into freshly fallen snow in the backyard.

Crunch, crunch, crunch!

His boots sank into the snow.

In the distance, Evan spotted something...

It was a stick, poking out through the snow. He understood the endless possibilities of what he could do with this stick.

He first decided to drag the stick in the snow to make a track.

He then ran to the tree with the stick raised high in the air.

Smack, smack, smack!

To his delight, the bright, white snow fell softly onto his coat.

With his mother's help, Evan made the best snowman he had ever seen! He helped scoop up the snow and pack it on to the small ball of snow to make it bigger and bigger and bigger.

Scoop, scoop, scoop!

Pack, pack, pack!

After pushing the arms into place, they stood back and looked with amazement at their new friend, Mr. Snowman.

Evan thought about going inside, but soon discovered that there was more fun to be had.

He turned around to see the silliness of his mother while she lay in the snow waving her arms and legs. To his delighted surprise, when she stood up, there was a snow angel on the ground!

Before heading inside to the warmth of the house, Evan looked all around the yard at the beauty of the snow.

He knew that one day, he would happily venture out into the snow again.

Crunch, crunch, crunch

A New Skill

Today, Evan demonstrated that he understands an important childhood skill: he went in the computer room and closed the door so that I couldn't see what he was doing. Yay!

We got the kids a portable dvd player for Christmas; it's been several years since they've had a portable. The main user of it, so far, has been our movie man, Kyle. Evan loves observing his brothers, and apparently, he's been observing what this new, blue, plastic thing is, although I never noticed him doing this.

But today, he showed us that he knew how to use it. He put in one of his new dvd's, Animal Planet. He can't get enough of watching or "reading" about animals.

So I was proud of him for figuring this out, but cautioned him about the need to find somewhere to sit while viewing the movie. He wasn't too fond of staying in one place with it, after all, it's portable! He also figured out how to see his favorite part--the first 5 minutes--over and over.

Basically, he had enough of my suggestions, so he went in the computer room and shut the door. The only other time he's ever shut this door is when I'm vacuuming in the other rooms.

After having a good laugh with Chelsey about how cute this was, I went in to check on him. And after I left the room, the door shut again.

I'm so proud of this new understanding...at least for today.

Home Movies

A couple of weeks ago, John came back from his parents' house in Florida with their car and a few boxes. His mom, battling cancer, is now living with his sister in CT. One of the things he brought back was a VHS that I had sent to them...around 20 years ago! So of course, I had to pop it in the vcr; the only one we have is on the little tv in Chelsey's room.

Over the years, I've taken a lot of video, but besides maybe looking at it right then, I don't go back to look at them. So, this was quite a treat. It was Chelsey, back in the day when the world revolved around her. Wow, watching her talk and interact, at what seemed like such a young age...it was like we were watching a genius! :) We kind of forget what other kids can do. Right now, I'm so impressed with Evan's progress. It's not that "I forget" that he's not where a 4 year old should be; I guess I just don't think about it too much. Hey, that's a good thing! :)

Yesterday, day 2 of a nasty stomach bug, and I'm still taking it easy, I started watching videos on our 8 mm that I haven't used in a couple of years. This time, it was mainly Kyle and Matt, 10 and 8. Another, wow. First, hearing their voices at first was so strange; it was like I didn't remember them ever sounding like that. And then, of course, I noticed just how cute they were. :)

The really funny thing was, was that I heard them each say a phrase they both sometimes still say. They were playing with a castle, and Matt said, "You're under arrest!" He still says that at times, although it's progressed to "Get on the ground!" (he likes to use these phrases on our animals...in a good way.) Yeah, he likes the show COPS.

Kyle phrase was "I sure wish the gang could see this." The gang, of course, is the Scooby Doo Detective Agency. Yeah, that gang, for years he's been wanting to head out to Coolsville to see them. :)

I only watched about 20 minutes yesterday, and then a little more today. Evan watched it with me today...on the small screen of the video camera. He liked the part where Kyle was playing with trains, but then when it went to another part, he started tapping the screen and sliding his finger on the screen. The modern child. He's so used to watching videos on our phones and being able to stop, start, and go back to videos. He was getting a little frustrated that he wasn't getting the same results with this.