some truth to hurting the one(s) you love

School in September was nothing but good-better-best... the honeymoon stage as his K teacher calls it.

By the middle of October, situations at school became iffy. The teachers and aides sent various notes home of Hayden having a difficult time. Two days ago, for reasons unknown to anyone but Hayden, he demonstrated an "excessive use of inappropriate language" as his teacher reported. I wanted to crawl in a hole when I read the part about an "extremely difficult day for all the peers around Hayden", due to the aforementioned language being "heard in the halls by many peers".

The note began with a "so sorry to inform" preface, and concluded with another "so sorry to have to share this with you".

I feel awful from every angle-- that the staff knows how deeply hurt I am to hear this yet they're the ones dealing with it all day, that Hayden is clearly unable to express what's really bothering him, and worst of all that Hayden's peers may form opinions based on his difficult behavior.

I believe his afternoon aide was on the receiving end of most of Hayden's outbursts, and she still took the time to write me a comforting note yesterday, "Hayden wanted me to tell you that he had an awesome day. He had a much better day in kindergarten."

Then this morning, in keeping with wanting to cheer me up (at least that's what it seems like), his OT reported, "good day so far!"

I have no idea what these people are getting paid but I do know that whatever it is, it's not enough.

His morning aide added, "Hayden had a great morning (today). He was so excited to bring home the monkey puppet he made. He told me Poppa Z will be so proud of him."

His kindergarten teacher snuck one more note in:
"Good ending today; Hayden had fun at sparkle ball. Enjoy the weekend."

Sparkle ball is a kindergarten tradition when the kids earn sparkle balls that go into a large plastic jar. In recognition of good sharing, cleaning up, following classroom rules, and being kind to their peers they have a Sparkle Ball Party. Today they earned their first sparkle ball celebration.

Considering Hayden's off-behavior lately, I was genuinely concerned about possible over-stimulation + hyper-arousal = acting out. So needless to say, word of his success was a huge relief.

It was a bit of a different story this afternoon after I got home from work. Most Fridays Hayden's grandma is here after school, and I typically get home a couple hours after that. After my mother-in-law left I didn't rush to cook Hayden dinner as I normally would, because apparently he had a hearty snack (four chicken nuggets and a hot dog). Later he ended up consuming a cup of applesauce, three strips of bacon...and six fish sticks. Not all at the same time.

Anyway, after Hayden's grandma left he noticed a shopping bag that I brought home. Inside was a baking pan which you can make little cake pops with. I see it as a munchkin wannabe, and potential bribing power (for, say, toileting). Hayden thought it was a game and wanted to play with it, and didn't like his mother telling him otherwise.

His frustration escalated to throwing all the cushions off of the sofa, dumping a box of crayons on the floor, tearing any pieces of paper he could get his hands on, and knocking a couple of his snack table chairs over... among other things but you get the idea.

At least he saved it for home.

a new voice

http://www.cbs.com/primetime/60_minutes/

I suggest visiting the above link, after CBS updates their site with tonight's episode. It should be available online, if not tomorrow, I am guessing by Tuesday.

The 60 minutes episode that already aired this evening from 7:00PM to 8:00PM featured a family perspective of Steve Jobs, before a segue into the ipad and autism.

The age ranges of the people they featured were around 1st grade and up to late 20's... all benefiting from using various apps on the device to aid in their communication.

Again, currently the episode available online is from last week. But CBS will update their site in a day or two, I'm sure.

So thankful that a fellow FX parent posted this to one of the closed fb groups :) I am glad I happened to catch that just 20 minutes into the program! My husband and I were glued...

a picture worth 1,000 words?

Hayden tends to become obsessed with things out of the blue-- something he just has to have. So far, eventually it will wear off and he'll become obsessed with something else.

One day he was fixed on getting a hold of the baby powder. The finale was a couple years ago when he took a bunch of his pickup trucks, put them on his bed, and then filled the truck beds with the powder. Except he lacks the fine motor needed to maintain a steady hand, and his aim is not great. Also, his spacial relations can be off and he may not realize that too much of something simply can not fit in something else. So basically his bed looked like a horrible accident on a snowy highway.

So we hid the powder way up high in his closet. It's been there ever since.

We also went through a water obsession. Luckily he can not reach the kitchen sink without standing on a chair, and even the sink in the masterbath he needs a step stool. But the sink in the main bath is a pedestal style, so he can reach that just fine. He would just turn it on and make a mess until he was soaked and so was the bathroom.

We had already turned off the hot water in there as a precaution, but eventually the prevention graduated to a child lock on the doorknob.

There have been tools he's been obsessed with, and made quite a bit of damage with. Just because they're intended for play and made out of wood or plastic doesn't mean they can't cause a dent. Or scratch. Or gash. Depends how much umph is behind it.

I can't even count how many tools we've had to hide from him over the years. I keep finding toy hammers in the most random places.

The DVD cabinet was an annoying obsession... we fought over that door countless times. Eventually the child-lock broke. It was never replaced because Hayden moved on to something else.

There have been so many obsessions over the years... the fax machine, the one wall phone in this house in the kitchen, certain snacks which he will only want for a period of time, and a recent one that is particularly annoying: he "hits us up" for cash. He wants his dollars, real ones, in his wallet. It's absurd.

Although none have been worse than his keen sense for where our car keys are, and his unrelenting determination to get his hands on them.

Well, the other day Mr. Hayden wanted something new: one of my binders. I have several with his school papers in them, plus a bunch from freelancing, and so forth. Yesterday for the life of me I could not get him away from them. So I promised him I'd make him his very own binder.

I filled it with random pages of information and pictures-- our home, our street address, telephone number, his school, there's a section on colors, one on emotions... you get the idea.

I am not even exaggerating when I say that after school today, he was so beyond thrilled to see it that you would've thought I just gave him a bucket of munchkins. Wrapped in cash.

I lost count of how many times he thanked me.

So while he was glowing over his binder, I emptied his backpack. The first thing I always do is look in the parent-teacher communication books. I was slightly concerned over today being his turn for Show & Tell. He only wanted to bring his leafblower to school, and the current theme is supposed to be something your family enjoys together. So I made a picture of him blowing leaves, and the description says that his family likes to be outside together and Dad will hit some golf balls, and Mom will water the plants. He is allowed to bring one prop, so the leafblower went on the bus with him. I know that thing can potentially make him hyper, so I discussed rules with him this morning and then prayed.

I anxiously opened his kindergarten book and I saw two notes-- each about a page. One from each of his Aides. I didn't have a very good feeling about it, but Show & Tell wasn't even mentioned. Except my intuition was in fact correct.

First one said that Hayden gave his morning Aide a very hard time changing him today. There was hitting and spitting involved. The second note was from his afternoon Aide, and she documented that she wasn't sure what set him off but he threw his socks and shoes and gave her a very tough time as well.

How can I not take these things to heart. It kills me. I am thankful for the open communication, no doubt, but I hate HATE reading about his outbursts.

I looked at him laying on his stomach on the living room floor, flipping through his binder with a beaming smile across his face. I went over to him and we looked at a few pages together, and then I asked him what happened today. He sort of looked off in the distance as if he was trying to remember. I told him that his Aides care about him very much, and they are only trying to help him. I told him he needs to be nice to them, and even though they both noted that he apologized he can not be acting that way in the first place.

I know he heard me, and I know understood me, but I also know it's not actually going to stop it from happening again.

As I went through the rest of his backpack, I opened the kindergarten folder and the envelope with his school pictures was in there.

I look at his angelic, happy face and (aside from the hat-head hair and his shirt being awkwardly buttoned up to his chin), I am just in awe of how gorgeous he is. Our son.

And I hate Fragile X so much at that moment. SO much.

baby steps

When it was all said and done, this was an interesting week. 

Behaviorally, Hayden had a tough time. But strangely enough-- he suddenly tolerated a bunch of new textures. Mainly between Friday and yesterday, he surprised us a few times.

On Friday Hayden saw me eating grapes, and he wanted to try one. They were seedless red ones-- so, a little bit sweeter and no surprise crunch in the center. However, the significant texture difference when biting into a grape is in itself more than enough for him to experience.

We tried first with a whole one, and it wasn't happening. So I bit one in half and then he tested it for a few minutes. He put it between his fingertips, and placed it almost all the way in his mouth. He closed his lips around it without letting go (talk about fine motor), and then took the grape half out of his mouth... over and over again.

Finally he ate it! Then he did it again-- with another half of a grape but this time he handed me the specimen when he was finished trying it. Then he stuck his finger along the inside of his cheek, and dug out a piece of grape skin. But the most he suffered was an odd expression-- never even gagged. This was certainly significant!

The best part was he jumped on my lap after the whole experience was over, and cheered himself. "You proud me?" he said? "Yes!" I answered enthusiastically. Dan, and grandma and grandpa Al were also very congratulatory!

The following day, yesterday, I offered him something new for lunch. I bought two pre-packaged lunch kits, thinking we could try one at home before possibly sending him to school with it.

This particular lunch kit has enough Hayden-friendly items with the sandwich, that I thought he may actually try it. It comes with a small bottle of water, a cup of applesauce and spoon, a little pouch of plain cookies for dessert, and ingredients for a turkey and cheese sandwich.

Coldcuts are not something that he eats as the texture bothers him, and so does cheese unless it's cooked in something. But there was just a couple times that Hayden tried turkey at school during a class party or something, so I knew it was possible for him to tolerate it.

If I could graduate to sending to him to school with something simple like a sandwich instead of a hot meal... wow.  That would be the next best thing to the sliced bread as far as I'm concerned!

He was very excited to open up the lunch kit and felt like it was a prize as it was a novely to him. I took out the small roll and showed him how to put the "sauce" (mayo) on, and then the turkey and the cheese. Then I managed to cut the mini sandwich in half. I opened the applesauce, the cookies, and the water which he loved-- his own bottle! There was also a pouch of fruit punch mix to add to it but we set that aside, as it's not so Hayden-friendly.

He ended up disecting the sandwich. However, in the process he consumed nearly all of the turkey and most of the cheese!

I will admit I had a side of chicken nuggets already prepared in case, and he didn't even touch them. Granted yesterday was not a "hungry" day, but I think he did well enough with the lunch kit that I can send it in for a half day or early dismissal or something along those lines...

Even though he is walking and talking, he still takes baby steps. I am fine with that. 

 

my kid

Yesterday was one of those days that the more I try to not think about, it's all I think about.

I don't want to quote what his communication books said, but the gist of it is this: Apparently he had a sour stomach, or something, and this led to 3 or 4 messes that day, and his clothes had to be changed. In the afternoon when he is in the mainstream kindergarten room, his Aide had to take him outside after lasting barely an hour of class time.

First was the unsuccessful circle time, during which Hayden only wanted to remove his socks and shoes over and over again. Then apparently during snack, he spit on the table, concluding with hitting his Aide. It was also noted, and this I will quote, that "Hayden's physical strength interferes with the staff's ability to help him."

Apparently once he was removed from the K room, and he and his Aide went outside to the smaller school playground, the words coming out his mouth were just as bad as what was coming out of his bottom.

I am actually quite relieved that the teacher did not call me, because I fear I would have been upset or defensive or both. So I did the only thing that I know how to do well, when I need to communicate something sensitive, and I wrote. I've deleted certain sentences from my email that are too personal to share (or not necessary to blog about, or both) but here are some excerpts:

"I just wanted to send you a message in response to Hayden's uncharacteristic behavior yesterday..."

"Even as Hayden's language has progressed so beautifully, he still struggles to verbalize when something is wrong. His overall self-awareness is something that will continue to be learned. "

"I can only hypothesize that yesterday his stomach was bothering him, and he didn't know how to say so. Instead, his discomfort came out in abrupt behaviors and inappropriate words. I gather his upset grew more severe as the day went on."

"Hayden understands apologizing for his behavior, and he understands a consequence such as time-out."

"We have also been giving him time-outs in his arm chair. We turn the television off, and he has to sit for three minutes (I know it's not realistic for him to sit still for six, even though one minute for every year of age is more typical of this method)."

"Perhaps the staff member who is with Hayden at the time of an inappropriate behavior, might prompt him to have a quiet time-out. Although I feel bad doing this when his poor behavior is a result of something such as a stomach ache which he doesn't know how communicate, but the fact is there are other children in the room. So he certainly needs to understand what is acceptable and what is not."

"Lastly, I just wanted you to know that we are still pending approval for Hayden's participation in a clinical trial for a Fragile X treatment."

"I wanted to ensure I carefully documented the efforts we are taking to help Hayden..."

"As always, thank you for the open communication..."

Granted I am most upset for Hayden and what he goes through, and I am also upset for the staff and what he doesn't mean to put them through. But selfishly, I am relatively upset for me and for Dan. I am not upset with Hayden, I am never ever ashamed of him, I love him and I am endlessly proud of him, and often quite impressed actually.

Though it can be tough reading those teacher notes, or the data sheet that charts his behaviors, it is all to help him: to keep us informed, and to try and pinpoint antecedents. Still, you don't wish for that kid to be your kid.

Hayden has some homework due tomorrow, and there was a lot of tears involved in getting it accomplished this evening. He is feeling well-- he never broke a fever, never got "sick", and had only one gastrointestinal issue today (at home). He is hyper as ever, and his appetite only lessened slightly. I know when he is truly ill, and this is not ill. He just didn't want to do his homework, and I don't blame him. School work is difficult for Hayden, period. Carrying it over at home-- the one place that he associates not having certain demands placed on him-- does not help. But clearly he needs to get used to it.

I will say this. After a lot of snot and tears, some writing on the floor, some writing on the furniture, and a few scribbles on my tablecloth... he completed two homework assignments. Yes, one for each class. And, he even did a third activity with me that I'm not sure was necessarily intended to be completed and returned. (It is fire prevention week at school, and I believe it was just a handout from the fire department.)

By the way, yes, I said "with me". As in, Dan was not yet home. One of us getting Hayden to do homework without the other, is not that far off from one of us attempting to trim Hayden's nails without the other. The latter is worse but not much.

He had a particularly tough time with a pattern sheet for his resource room homework. It's too many things on one page-- there are four rows, each in a different color, and each row is followed by three images. They are supposed to circle the one image that comes next in each row's pattern. Eventually he accepted hand-over-hand help, and we circled the answers together. I put an "H" at the top, and asked him to finish his name. He sort of scribbled a line, but he was also using his knees as an easel. I tried to get him to sit at the table and it was not going to happen.

Then we moved on to kindergarten homework. It was matching opposites. I thought that drawing a line between the opposites would be easier than cutting and gluing the images as instructed at the top of the sheet. I indicated what goes with what, by making an "x" with coordinating colors. It worked for one of the matches: 'Big > > > Little' he drew a line. I wanted that line to remain visible, so I cut only the bottom two squares for him to match and glue. (Although we used tape because he was not in a glue-friendly mood. And I was not in the mood to tolerate him with glue.)

I prompted him to put the "down cat" next to the "up cat". He placed it on top, and that's fine. Not complaining!

Per my plan A, the two 'Funny > > > Sad' images already had a yellow "x" beside them. I loosely followed his lead of seeming more understanding of the "on top of" instruction, so I prompted him to put the sad face on top of the yellow "x". And he did:

Last but certainly not least, let me just summarize what he did with the firefighter sheet. I asked him five questions based on the pictures, and he isolated his index finger and appropriately pointed to each answer. I asked him to find what the water comes out of, and he looked, and I said hose, and he found it. I asked him what tool the firefighters use if they need to break down a door, and he pointed to the axe. I asked him what they use to climb, and he found the ladder. I asked him what they wear, and he pointed to the gear. I saved the easiest for last and asked him what they drive, and of course he said, "firetruck".

There's an extra tip at the bottom of the page to discuss professions with your child, and tools they use: Teacher, Doctor, Chef, Illustrator... and I translated that last one as Someone Who Draws. I had to offer some suggestions for Teacher to get him going, and he appropriately said she uses books.

Then my child who just recently had a nervous breakdown over doing homework, proceeds to tell me that a Doctor uses a "ste-scope". It may have sounded more like "seh-soap" but I know exactly what he was talking about. I enthusiastically exclaimed, "Yes! Stethoscope!"

He said a Chef uses a hat (works for me), and Someone Who Draws uses markers.

Snot, tears, crayon on the carpet, ink on the ottoman, both on the tablecloth... whatever. He completed three homework assignments.

Yes, that kid is my kid. 

when he makes me proud, he sure does make me proud

H made his bed all by himself this morning:

a day to remember

Yesterday, Friday, I took the day off from work. It was the annual ME Day for kindergarten. Each child could have one guest to watch them participate in performing songs, completing various activities in small group "centers", and sharing their Me Book with their special guest.

I chose cookies from the refreshment contribution list. Thursday night I baked two dozen oatmeal chocolate chip cookies and layered them on a faux silver platter with wax paper in between, so they wouldn't stick.

I left the house with my platter in one hand, my keys in the other, my purse on my shoulder, and my chin up. I was proud. I was on my way to support my kindergarten student!

If I only had a video camera in my hand when Hayden saw me walk into the classroom. He was elated, and quite vocal about it. There was not one student or parent in that room who did not know that I am Hayden's mommy. The students were already positioned in a semi-circle formation along the back of the room, ready to perform. There was one boy on the end in a rifton chair, his Aide standing behind him. Having the biggest smile among all the other children (13 or so), it was his enthusiasm that really made him stand out.

Hayden's smile can not be missed.
Even though he did not recite most of the lyrics along with the other children, he clearly knew the songs. He was so excited to do some of the signs and hand gestures, that his timing was a little bit early. Then the children formed a single file line in preparation for another song. Following prompting from his Aide, my happy boy stood and joined them.

They walked in a circle around two small tables, and sang along with the music. At one point there were lyrics to which they stopped and crawled around the tables, and another point when they jumped around them. Hayden accurately, and appropriately participated as I snapped away with my camera.

Following the song and dance it was Center time. There were three tables set up as designated areas for Snack, Reading, and Writing. The fourth Center was on the area rug where the children would share their ME books with their guest.

Hayden was directed to the snack table first :). He ate veggie chips that I packed from home, and then his Aide asked if there was any other refreshment that he may like. I surveyed the choices and noticed a cheese and  cracker platter. I grabbed a few crackers for Hayden, and then picked up a couple pieces of pepperoni.

He ate them!

He asked for more crackers, and I picked up a couple more pieces of pepperoni.

He ate those, too! WOW

Then he was directed to the writing table. Each child was given a sheet to draw what they like best about kindergarten. At first Hayden did not want to participate, so his Aide showed him two little cars. She said if he did his work, he could have them. In seconds, he sat and attended. He was given a picture to cut out and put on his page. He accepted hand-over-hand assistance from his Aide to cut out the picture, which showed friends playing outside.

He used a glue stick to affix it to the page. Then it was time for shapes. Instead, Hayden removed the pieces from the tray and then used it to play a version of peek-a-boo. We both tried to encourage him to do one more task. He was not interested.

Finally I said I would give him money. Sure enough, the teacher asked for the yellow shape and Hayden handed it to her. Then his Aide asked for the red shape, and Hayden handed it to her. Then he was prompted to count, and then he was done. I handed him some coins. He wanted cash. Three dollars later he was exuberant.

It cost me, but he finished his work! (Earlier that morning, I also ended up paying Hayden to get on the bus. He put three dollars in his Yankees wallet and then he finally sat down and allowed me to buckle him in.)

Hayden didn't want to go to the Reading Center table, so we proceeded to the area rug to see his ME book. The very first page says, "I am happy when...", and Hayden apparently asked the teacher to write, "...Pop Z picks me up." (Dan and I aren't even mentioned until page three where there is a drawing of family.) The pages that follow highlight activities such as blowing leaves, eating chicken, and playing on the playground, to name a few. Hayden's ME book is quite accurate.

When we left the school, Hayden was clutching his wallet (with three bucks in it), and the other three singles I handed him in the classroom. As we pulled out of the school, Hayden sat smiling with his six bucks. 

He asked me for "Gonalds" (McDonald's), and I thought about it for a minute. I was very proud of his big day, and it would be convenient for me to head in that direction. I needed to stop at the bank anyway, and then I could get gas on the way home. So I passed the turn I'd normally take to get back to the house, and changed course towards Gonalds.

I do not remember specifically what prompted me to turn around, but when I looked at Hayden he was holding a dollar bill out the window. I immediately told him not to throw money out of the car and I put his window up. I slowed down looking for a place to pull over. I had to drive at least a quarter mile before I found a spot. I put the truck in park, turned the flashers on, looked at Hayden and said, "where is the rest of the money?" I think he said something along the lines of, "me not have it." I grabbed his wallet and it was empty. I scanned the back seat and there was no money in sight.

Following at least ten minutes of driving up and down that road, trying to find the money by surveying along the roadside, even getting out the truck a couple of times, I ended up recovering just one of the singles. The other five were no where to be found.

By this point, Hayden was quite frustrated because of all the back and forth, and the waiting. As soon as I turned down the next road, he realized we were no longer heading to Gonalds and started to get upset. By the time we pulled in our neighborhood, he was crying.

I told him that I'd give him something to eat when we get home. Once in the driveway, he caught his breath and (for as long as I live I will never forget this) clear-as-day he said, "I'm sorry Mommy."


That was the first time he has ever voluntarily apologized for anything, without any prompting. I thanked him several times.

I walked around to the other side of the truck to get him out, and he did not want to leave his seat. He muttered something about Gonalds again through his crying, and I said I'm sorry we're not going there but I will give you whatever you want to eat when we get inside.

I let him be for a couple of minutes, tried to allow him to calm himself down, and eventually when he was ready he came inside the house.

It never ceases to amaze me that just when I think I am going to remember a big day for one reason, I will never forget it for a completely different one.

more awarenexs for my truck

for all of the parents & caregivers

when you have those antecedent weakdays, consider this thought that someone very special (who will remain un-named) just shared with me:

"...maybe whatever is bubbling to the surface in Hayden is taken out on you- not because you're 'rushed' or a bad mom
but because he is closest to you and loves you to the point of not knowing where he ends and you begin."

However upset, frustrated, worried, mentally and physically drained you are... I bet this person's words will make you feel better, too.

a bad bus day

One of the worst. Everything has been going well-- why this out of nowhere?

He was kicking my legs, stepping on my feet, and cursing at me. And a lot of, "me hate you!" 

After a few minutes of wrestling with him I finally forced him on his seat, and buckled him in tight.

I handed Hayden his hat and left his backpack behind the bus driver, to prevent him from potentially emptying its contents and throwing them.

I feel bad for him, whatever he is going through that I clearly can't figure out. And I feel just as bad, that I couldn't simply pull him off the bus, skip work, and agree to stay home with him until he calmed down. I hate all of this.  

If you're listening up there...

As proud as I am, that Hayden warned me about "poopies" this morning when I went to change him... I WISH he could tell me before it happens. Oh, I wish!

From my mouth to His ears... PUHLEASE!

He realized I did not have a little bag or anything, and only one wipe in my hand, so he immediately looked at me and told me the important detail that I surprisingly hadn't detected through my own senses.

I thanked him. He smiled and asked, "you proud me?" 
He knew before I could even say so. 

what keeps me going

I meant to logon yesterday to share two amazing notes from Hayden's parent-teacher communication journals.

One from his AM teacher, in the resource room (keep in mind that "write" really means scribble, albeit a controlled scribble):
"Oh my goodness. Hayden wrote his name on the board today. After writing it, he yelled, 'I did it!' All the kids were cheering for him. The expression on his face was to die for." 
--September 29, 2011

A note from one of his Aides:
"Just wanted to share with you...Hayden's language has exploded. he explained a whole story to me about his flooded basement and how he went and peeked in the hole with a flashlight and the water was coming in and the sump pump was running. And every time he said sump pump he would point at me and laugh (he calls his Aide 'Sump' because he can't quite say her last name). It was so cute."
--September 30, 2011