Clouds, May 2010

Clouds, May 2010

Thursday, December 29, 2011

a very hayden chrismukah

The holiday season kicked off with the first nights of Chanukah, followed by a visit from Santa that same week. He arrived on a firetruck direct from the local engine company. I am guessing Hayden vaguely remembered from last year, which was the first year that we made an Operation Santa donation to have Hayden added to the Santa visit list. I believe he remembered because before it even happened, he was asking questions and talking about a firetruck and Santa... and well, it's just too much of a coincidence. He may have heard other children talking at school, but I know his memory and I bet it was in there.

The rumble of the engine and the whirl of the siren crept up our street, followed by the wide glow of the lights and the additional blinking decorations adorning the truck. Then, around the bend, the truck itself climbed the road as if following its own introduction.

Hayden was initially unsure and borderline nervous (rightfully so, because he knows what firetrucks are for)-- and then I knelt in front of him and offered my curiosity and excitement. Once he saw Santa, there was a lot of screaming and jumping and cheering and "Thank you! Thank you! Thank you!" I could barely hear a thing by the time the quick visit was all over, but that lingering and beaming smile on Hayden's face was perfect.

He tore open a small gift (which of course, unbeknownst to him, we provided ahead of time) and absolutely loved it like it was the best thing in the world.

I'm sure the nightly Chanukah gift helped to keep momentum going. By the second or third night, when I recited the baruchah and got to the last part "...l'chad liknair, shel..." Hayden appropriately concluded, "Chanukah!" on cue. (Mainly pronounced "honkah").

However, it took a couple more nights to explain that we don't blow the candles out because it's not a birthday.

For every night, as soon as it got dark out or he smelled dinner cooking (which ever came first), he "reminded" me about Honkah. This year's Christmas arrival was a little bit confusing because typically Chanukah is complete by the 25th. But it was nice having another couple nights to slowly ween him out of the holiday excitement with a few lingering gifts.

He spent weeks talking about having Honkah and hanging stockings from the fireplace-- which, following Christmas morning, he was ready to take them down. (Visual cue of task completed.)

Christmas Eve we celebrated Chanukah with cousin Flora. They continue to interact absolutely adorable together. The winner gift that evening was from Aunt Jenna and Uncle Daniel-- a tall-as Hayden gas pump! He also got an ever-amazing iPad from Grandma & Poppy, to carry over use of Apps that his S.T. has been working on with him at school.

Christmas morning came and for some reason H woke up sick, but I think the build-up of anticipation may have gone right to his stomach. He just got sick the one time, and that was it. (The following morning his body decided on a random nosebleed instead.)

Last year for Christmas breakfast at Aunt Dana's, Hayden only wanted to bring his new (at the time) guitar. This year it was a simple Cars2 pad and pen set, which he carried everywhere. Until he opened the gift of all gifts from Grandma & Grandpa...
A Cadillac pick-up truck towing a trailer with a red & white speedboat on it.

Later that afternoon Christmas concluded at Dan's aunt's house. Less chaotic than you would think everyone enjoyed the obscenely generous spread of Italian food. After the feast, we even got all fourteen cousins lined up on the couch for the "19 & under" pic (3 are new to the family, by aunt Dana's second marriage... though 11 is a steep number in itself). 

The following day (yes, there's more) we met at Grandma Suzi and Poppa Z's house to visit with cousins who were down from Maine. And celebrate some more Chanukah, of course.

The very next evening, Hayden had a sleepover at Grandma & Grandpa's house (with cousin Kaityn), so Dan & I could work on Wednesday.

It's been a whirlwind of a winter break... New Year's will likely be a lot calmer. Possibly another sleepover, this time at Grandma & Poppy's. We'll see.

But for someone who is quite prone to anxiety, and has a prevalence of "colorful" behaviors (to the fault of that fragile x of course)... He has been gliding through all the festivities like a pro mingler.

He knows how to have fun, our little big guy. Delete that from the list of things to teach him.

Friday, December 9, 2011

flashback to hayden's 1st holiday

I was looking at these pictures after I created our 2011 holiday card online. Hayden was six months and this was his first holiday season back in 2005. He was an adorable baby (needless to say) with the best edible cheeks and a smile that was not to be believed unless you saw it for yourself.

Speaking of that smile in the picture with the red sweater, you wouldn't know it but his Aunt Jenna was supporting him as he laughed and played with her. If she let go, he would have lost his balance because he had not yet developed enough trunk strength to support his torso. This would have been the only early sign of FXS if there was any, but even at that it was incredibly subtle.

I look at the other pictures and I see an infant playing with a toy (at least it looks that way), and I also see an infant making eye contact. Even knowing what I know now, I would not think anything at all was different about the incredibly adorable baby in these pictures.

Another two months passed before Dan & I really began to wonder about Hayden's developmental delays (though our focus was temporarily sidetracked when he contracted RSV). At the time these photos were taken, 11 months would come and go before we ever heard of Fragile X Syndrome.

As much as these pictures make me emotional sometimes, I do find significant comfort and hope when I focus on just how far Hayden has come. And how easy it still is to make him laugh.

Wednesday, December 7, 2011

acceptance is contagious

To me, the most unsettling factor of yesterday's vaccination was a young kid I noticed in the waiting room at the pediatrician's office. He was about ten years old, quietly waiting for his sister and mom who were in with the doctor.

He repeatedly turned around when Hayden spoke. The other people in the waiting room may have been throwing glances, but this boy had to turn around in his chair to look. 

There was another toddler in the waiting room-- he was babbling up a storm and dancing around and prompting smiles from the other patients in the room. I was relieved when Hayden's name was called.

Before we left the house to go to the doctor, Hayden knew something was up but didn't know what. I told him we were going to the doctor so he could get a dot of medicine on his arm so he would not get sick this winter. I told him all of the kindergarteners get the same kind, and it was his turn. I said we need a piece of paper for the school nurse, and after he got his dot we'd get the paper.

He went to the bathroom twice before we left, again in the car on the way over, and then once more before we made it out of the doctor's office. Truth be told that four poops, two shots, a couple stickers, and six doughnut holes later... he was fine. Anxiety over.

As soon as we got in the car and his crying calmed enough that the first doughnut hole went in his mouth, he said, "mmm these good" 

My guy. My brave guy who didn't even notice the young boy who kept turning to look at him when he spoke. Because his language sounds different-- much like that of the toddler who was performing around the room. Except Hayden is almost 6 1/2.

Interestingly enough, today I learned about a blog post from a fellow parent of a child with FXS (via facebook). She was upset about something she witnessed at her daughter's daycare (rightfully so). She noticed the other kids who would stop what they were doing, put away what they were playing with, and move on to something else if they saw her daughter approaching. Just because her sweet daughter happens to have fragile x syndrome, and autism, and responds differently than other kids.

Several other parents of children with fxs copied the link to this woman's blog and posted it on facebook:
The Good: not me, Not Me, NOT ME

This inspired me to share the following post on my own page:

"Inspired to speak up based on a blog post by a fellow parent of a child with FXS (& on behalf of any human being who has ever been excluded):

If the average child stares at someone who is different from them & the parent says, 'It's not polite to stare'-- that parent is not seeing the larger picture. Their intentions may be good, but this is an inadequate way to teach your child acceptance. Regardless if your child is a kid or an adult, you are the parent. Acceptance begins with you.

In the same respect, if you’re an older sibling or cousin… think of who is looking up to you. What are they really seeing?

You owe it to the younger generation to take responsibility, to allow them to understand that this universe is made up of all kinds of different people. They can learn from you, more than anyone else in their life, that differences are not only OK but they're a normal part of existence."

I am quite honored that a fellow NJ parent-- whose name you will recognize if you're part of the FX community-- also shared my post:
Paula's Place -

Please consider sharing the idea of acceptance with others you know.
I can only hope one day that young boy in the waiting room is lucky enough to embrace the differences around him, and smile.

In the meantime, I'll continue to appreciate the one that beams across Hayden's face on a regular basis.

Tuesday, December 6, 2011

Hayden, MD

Not in the medical doctor sense.

Hayden's classification is MD, for multiply disabled. Every student with an IEP (Individualized Education Plan) has a category based on diagnosis and/or challenges.

It was recently brought to our attention that the district is implementing an MD program for children like Hayden, and he is one of the students they have in mind for this particular program. At the time of our recent meeting, the case manager did not have any additional information available.

We know the program is supposed to begin early 2012, and we know that they're probably going to use a former first grade classroom that is not filled due to lower enrollment. We do not know if this MD program will replace the time he spends in the LLD room in the morning. Currently his day is split between the Language Learning Disabled self-contained classroom in the morning, and in the afternoon he is included with the kindergarteners.

Both his AM & PM teachers know him very well, and they are fantastic with him (to say the least). We are concerned about the details of this program, the transition, and what this means for Hayden on a daily basis moving forward. It's unsettling and all I can do at this point, is pray that in the long run it is for the better. According to his kindergarten teacher, it should be if this is implemented well.


However, we did agree that we would continue to meet every four weeks or at least have a conference call. I would like to inquire about this MD program again, and see if any more information is available. Conveniently, the (new as of this school year) outsourced case manager is only contracted for three days a week. I had too much going on the past two days to get a hold of her before she left for the day (at work we are crunched to get end-of-month billing processed for November, and the deadline was today). I understand the case manager is not back in the office until Friday. Tomorrow I hope to get in contact with the education consultant that sort of oversees everything. 

In other news, Hayden had several fantastic days recently. Saturday we had a long drive down to PA to see a college friend of mine. Shortly after we arrived, their new baby boy woke up from his nap and Hayden sat to hold the baby. It didn't take long for him to initiate play with the baby's older sisters (both younger than H), either-- they have met before but it's been at least a year and a half, since. Hayden and the two girls played very well together.

Sunday we had another drive (not as long) to go to my friend's daughter's baptism. Hayden talked a bit during the church portion, but overall he did so well I was nothing short of impressed. After church there was a reception at a nearby restaurant and H held out for nearly the entire length of the dinner. He pooped twice which was a serious pain for us, but his behavior was good and I will take poop over bad behavior any day.

Then, yesterday after school when I asked him how his day was or what he did he actually answered me! He told me his teacher's son came to class and wrote her name on the board. The teacher confirmed that did in fact happen! I LOVE that he can tell me bits and pieces about his day.

This afternoon we are leaving shortly so he can get his kindergarten vaccinations. Less than a week ago, the school was audited by the state and Hayden's name was pulled for not having up-to-date shots. I have doughnut holes in my purse and fingers crossed...

Wednesday, November 30, 2011

the good, the bad, the ugly, & the BETTER

Well, the good news is that H sat on the toilet again over the weekend. Nothing happened, but he enjoyed his reward for sitting there (insert me rolling my eyes):

No, the bad news is not that nothing happened. The bad news was Monday following Thanksgiving Break. The teacher's entry in the morning journal said he did well-- they started the letter "Ss" and read Growing Vegetable Soup. The afternoon teacher had a different perspective. One of a loud child who was particularly hyperaroused that afternoon, and seemed to be having difficulty. His chart was the ugly part which indicated that he was screaming when the children were doing a holiday craft, so he had to be removed from the kindergarten room.

It makes me sad-- for him, for them, for me. We are now less than 18 hours away from the meeting I requested last month. I am at least thankful that Tuesday and Wednesday reports were BETTER.

(Except for the nurse alerting me that he's missing his kindergarten immunizations and he has two weeks to get them or ----)

But yesterday the kindergarten teacher actually noted:
"Hayden WOWED us today with cooperative behavior / 360 from yesterday"

Then today, both of the Aides sent home some more positivity:
"Hayden had a great morning! He is so excited to show you the story he has in his folder because there is money on page 7."
"Hayden had another great day!"

Lord willing the best is yet to come tomorrow. I'll report on the meeting either way...

Wednesday, November 23, 2011

his first gobble

Since becoming a mom, I could have sworn this is the first time my birthday was going to fall on Thanksgiving. But I stand corrected... the year H was born apparently my birthday was on Thanksgiving.
Anyway, this is a picture of him that day...eating baby food sweet potatoes :-D

I just showed this to Hayden. If I had ANY clue as to the reaction he was about to have, I really would have video taped it!

I consider myself a pretty decent writer, and I can barely put into words how amazed he is with himself. He had his hand on his cheek because he was literally in awe. He pointed to his eyes and said they were cute, he pointed to the food on his face and laughed, and he said, "me borned?" I said, "Yes! This was taken the year you were born... your first Thanksgiving."

I am so angry I did not record that!

kindergarteners feasting

Dan was there & took these pics with his cell phone, but you get the idea...

(Apparently the children had fun remembering H's Halloween costume, & said they were eating at Cafe Hayden!)

Monday, November 21, 2011


the kindergarten classroom mascot accompanied Hayden home this afternoon, for another sleepover:
(the blurry, brown thing over his face)

(and yes, that's a cash reward for helping me record in Ted E. Bear's journal)

   ^^     ^^
See below:

"Ted E helped me pile wood outside after school. I had a bath and then we watched house shows."

Friday, November 18, 2011

this is my 89th post; on November 18th, of 2011 (for the record)

I caught a whiff that H must've gone to the bathroom, and since it was near his bedtime routine anyway I started the bath before changing him.

While the tub filled with warm water and Mr.Bubble, I "cleaned" him up. There was only a little bit but he often goes in stages, and especially a favorite time is after bath (insert emoticon for rolling eyes if there is one).

After his hair and body were washed, and I listened to repeated pleading, I finally turned the shower on for him. Our washer & dryer are in that bathroom, and a laundry load had just finished. I started putting the clean clothes in the dryer while he practically narrated everything that was going on in the shower. Then I thought I smelled something.

I peek over and sure enough (I know it's gross, bear with me) there's a brown ball in the center of the tub. He was "upstream" from the accident so following a tic-like inspection I lifted him out there, wrapped a towel around him and plopped him on the toilet, not leaving him much chance to have a choice in the matter.

I removed & disposed of the object in the tub, grabbed the bleach from the laundry closet and starting pouring it on the porcelain.

Next thing I know, H stands up & starts wiping his butt with the bath towel. I quickly put it aside-- didn't even look to see if he was successful or not, because I didn't want to know. Then I put his bathrobe back on, but flipped the back up to his shoulders so he could sit down on the toilet again... neatly (for lack of a better word).

Once all the clean laundry was in the dryer and the washer was re-loaded with the newest dirty laundry (on hottest water/ double rinse cycle) plus extra detergent, and the bathtub was rid of any and all DNA... I tried to investigate the status of the toilet situation.

What began in his diaper and continued in the shower had finally, successfully (and properly!) concluded on the toilet.

He saw how happy and proud that I was, and immediately asked, "give me money?" I told him he was welcome to whatever was in my purse.

Once he was officially clean and I helped him in his PJs, he very patiently waited in his armchair. I looked in my wallet and realized I only had two dollars so I had to borrow another three from his bank. (A while ago we had to remove his bank from his room because he would not stop trying to open it.)

I sat down in front of him on the floor and I handed him the first dollar. "This is for sitting on the toilet," I began.
He smiled at the bill in his hand. I handed him the second dollar and said, "This is for pooping in the toilet."

He smiled at the two bills in his hands. I handed him the third dollar and repeated, "This is for sitting on the toilet."
He smiled at the three bills in his hands. I handed him the fourth dollar and repeated, "This is for pooping in the toilet."
He smiled at the four bills in his hands. I handed him the fifth dollar and repeated, "This is for sitting on the toilet."

He beamed at the five bills he was holding. I placed my hands on his knees and reiterated how proud I was. My eyes began to well up, and with that Hayden said, "oh, mooom," stood up and wrapped his arms around me.

My face was soaked.

I gave him permission to go tell Gad the good news (asleep from having worked night-shift), so together we went in the bedroom. Hayden was so anxious he was stuttering a little bit, but he got out, "poop" and "koi-let". I confirmed the story for Dan and Hayden received another beautiful congratulations.

We left Gad so he could go back to hibernating, went in the other room and sat down to watch some TV before bedtime. At one point H said something about his "coo gollars". He stood up and repeated "need coo gollars" or "where's coo gollars"...I can't recall exactly how he phrased it.

I looked at him and sure enough he had three singles in his hands.

My face was soaked again.

I tip-toed back in the bear cave, blinded by my own tears, only guided through the darkness by a mere glow from my make-shift cell phone flashlight.

There on the floor beside the bed, I found two dollars.

I don't think I could have been any more proud of him this evening unless he wrote this 89th blog post himself.

Tuesday, November 15, 2011

and in other news today:

The logo has launched!

Same phenomenal organization; fantastic new logo:

visit to see more!

I also wanted to share an encouraging note from one of H's teachers. This was in the
communication journal today. She wrote,
"Oh my G-d what a great day. He sat at my table without his Rifton chair for 20 minutes."

She's supposed to be sending me a pic.
Pretty fantastic to say the least.

stay tuned

I've been sick for a few days now with flu-like symptoms, and I was unable to go to work yesterday. This morning I originally sat in front of the computer to send another out-of-office email as I am still not feeling well.

I attempted to log-on to corporate webmail, and the page kept getting stuck trying to load. I was frustrated and opened a new tab while I waited for it to be un-hung up. I opened facebook, and at the top of my newsfeed I see a blog post from an aquaintance. Our parents are friends, but outside of facebook-land I don't personally know her very well.

In recent months I feel like I've gotten to know her, as she has been documenting a horrific experience.  A short while after she got engaged, she was diagnosed with a very rare form of cancer. Seven months (or so) later, after completing various cycles of the most aggressive treatments available (and somehow having the strength to get married in between), she recently posted that she would have a follow up scan.

This morning the blogpost at the top of my fb newsfeed reads, "The Final Installment." I knew the news before I read the rest...

Her family has the biggest miracle of all to celebrate this holiday season as she finally received the news her scan was clear.

I read the blog entry like a tragic novel with a twist to a fairytale ending. As if I grew to know the characters over these months, and could share in their joy. I felt so relieved for her that she could write, "The End".

Suddenly I started crying and I could not stop. Again, I do not know her very well and although I have known her since childhood I did not grow up spending time with her. Was I just feeling empathetic as a fellow mom in her mid 30's? Was it the flu? Was I relieved for my parents dear friends?

As I stared at her blog entry on my screen, I started thinking of my own blog. I can't scroll when I'm on a new entry page, but without looking back I am pretty certain my last post was of Hayden getting a haircut and tolerating it really well. Just like a big boy. Only followed by wanting to take a shower. Just like a young guy.

And then it hit me out of nowhere and I sobbed. Although I am not comparing my son's genetic disorder to life-threatening cancer, and I am certainly not comparing his challenged life to someone whose life could have ended... still, as the person who gave him life, I feel sad that it's indefinitely compromised.

Lord willing he will be toilet trained one day. Lord willing there will at least be effective enough treatments for FXS that all of their lives can actually be comparable to that of a typical person. And if there's truly a miracle, there will be a cure.

But until then, the fact is I'll have a lot to write about.

Friday, November 11, 2011

some days

He got in the chair all by himself, and didn't even need to sit on Dan's lap when he had his haircut today. (And it was a different person cutting it-- totally out of routine!)
Then he wanted a shower before bed, not a bath.

Some days he is very grown up.

Saturday, November 5, 2011

it's not a party until someone breaks

I was relatively nervous about yesterday. The Halloween parade at the school, originally scheduled for Monday ON Halloween, was canceled (as was school) due to the odd October snowstorm.

I remember when Hayden woke up that morning and I gently explained about the school not having heat because the power went out, and the parade would be another day. I was surprised when he cried and felt awful. Finally when I told him he would see Fluff later at Grandma and Poppy's house, he calmed down. Hayden's other grandma also stopped by that afternoon to see him in his costume before we left, so that too helped cheer him up.

The school was closed for two days, and on the third day he actually cheered in excitement when he was getting on the bus. But still we had an out-of-routine week, and since I couldn't prepare him ahead of time with the snowstorm and it's effect being unplanned...we just had to take each day as it came.

By Friday I was genuinely concerned between his recent difficult behaviors and this week being such a different one, that he might act out and not want to join his peers. The excitement of the day could certainly lead to hyperarousal and further complicate things.

The parade part would probably be fine because he generally enjoys being outside. As expected he walked at an appropriate pace around the field with the other kids, and held his Aide's hand the entire time. He was ecstatic to see his cheering fans (Grandma, Grandpa, Mom & Dad).

Once inside the classroom for the party portion of the afternoon, he was a little loud at times and often wanted to do his own thing. They had centers set up so each one was a different activity... crafts, snack, story time, ring toss, etc. He ate snack at the craft center while I assembled his bat complete with his own handprints as wings, and a Halloween picture frame. When he started to fidget I gave him my camera. Taking pictures occupied him for a few more minutes, and then his aide let him borrow the tail of her costume for some added amusement.

Once out of his rifton chair for story time on the carpeted area, he was not exactly in the mood to attend anymore. His K teacher has a small hand drum that she uses when it's time for the kids to switch centers. Hayden was fixated on it and that was that.

I noticed the classroom mom eyeing him every so often. (It was difficult to tell if it was a glance of disapproval, or if that's just what her face looks like.) So when she was setting up for the next activity while the children were having story time, I went over to introduce myself and ask where I should put the goodie bags.

Without even looking up at me she said, "Hi, how are you?" More as a statement not a question. She is certainly a task-oriented classroom mom, but doesn't smile much. I showed her where the shopping bag of goodie bags were, and asked how or when she wanted me to distribute them. She started to offer an over-analytical answer...something about "if the kids are doing this, and then they have those, maybe we should do it this way, but wait until after that, for these..."
No idea. She lost me. At one point she even added that she hopes the holiday party isn't like this.

Mid-conversation a mom standing to my left said, "I'm just in charge of the ring toss-- that's all I know!" When the classroom mom was finished speaking, I was left having no clue what I should do with the goodie bags.

Between the kindergarten orientations and a couple of these events that parents have been invited for in the K classroom, most of them are now aware which kid is Hayden and that he's a little different. They definitely know I'm his mom.

So yesterday when one of the other moms came up to me because she noticed the 'Our Fragile X World' brochure (with our picture) still posted outside the front office... she completely improved my perspective.

She recognized us, read it, and truly could not say enough nice things about it. She was smiling and teary-eyed. I can barely put
into words how that warmed my heart.

So I think in December when it's time for the holiday party, let the class mom arrive all wound up. As for me, I am going to arrive with a completely different attitude.

Tuesday, November 1, 2011

sorry streak

Ever since Hayden apologized to me last month, so heartfelt and sincere but more importantly for the first time in his life when it was absolutely appropriate, he now likes to throw out "sorrys" all the time.
Almost like someone who deliberately bumps into you, and then says excuse me.

For example Hayden will take my cup, usually without asking and even when he has his own water, have a sip and then dump out whatever is left. He'll walk away and as casually as I'd expect to hear a thank you, he'll say, "sorry mom".

Today he decided to throw half the contents of our living room over the Dutch door to the kitchen. The door is typical in height and size, except it does not have a top half for some reason.

Anyway, I do not know the order in which everything made it over (I was occupied in the restroom at the time), but here are some of the items that were on the floor (and explained the noises I thought I heard):
his life-size lion cub stuffed animal
two chairs from his kid table
a toy drill
a piece of wood
couch cushions
a throw blanket
and when I arrived at the scene, he was picking up a small area rug.

When he saw my face he started repeating, "sorry mom" in the same tone that he would say, "hi mom".

I told him that unless he says it like he means it, and shows me he's sorry by helping me to clean up, it's not an acceptable apology (that is, in language he understood). He did not like this very much.

I don't believe he was seeking any kind of sensory input when this happened, because he was perfectly calm when I told him I was going to the bathroom. There was a movie on, but he seemed more engrossed in playing with his trucks. There was no identifiable antecedent.

Ultimately I was unable to get him to help me clean the mess up, and out of frustration I (jokingly) muttered something about calling a taxi to come get him. Next thing I know he's got a computer case that he uses as a briefcase when he's playing "go to work", and he shoves a sweatshirt and undershirt in there and possibly a dirty pair of socks (in other words, things he had taken off and found on the floor).

So either he called my bluff, or he really wanted to leave. Hopefully not the latter, but something tells me he would have said sorry on his way out the door.

a new fxs awareness day

On May 2, 2009, Leo Messi dedicated two goals to Fragile X Syndrome at the Santiago Bernabeu Stadium of Madrid.
This November will mark the first nationally recognized FX Awareness Day in Europe!


Friday, October 28, 2011

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.

Sunday, October 23, 2011

a new voice

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...

Tuesday, October 18, 2011

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.

Sunday, October 16, 2011

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. 


Wednesday, October 12, 2011

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

Saturday, October 8, 2011

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.

Wednesday, October 5, 2011

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.  

Monday, October 3, 2011

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. 

Saturday, October 1, 2011

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

Thursday, September 29, 2011


I hate antecedents, especially on weakdays. Before I became a parent, they were just weekdays.

Antecedents sound like something I should be able to eliminate with bug spray.

Oh, we learned all about the antecedents when Hayden was diagnosed. These are the nasty circumstances, contributors, conditions, causes-- whatever "c" word you choose to use-- that will likely result in a meltdown. For instance, antecedents can fuel a meltdown even over daily transitions such as getting on the school bus.

The experts tell us to prepare for this, prevent that, try those techniques, expect these results, and beware of any and all transitions.

Yesterday I said, and wrote, that Hayden would probably be absolutely fine getting on the bus this morning since Dan is home on Thursdays. My suspicions were confirmed. I am an antecedent. I am the antecedent mother.

(Never mind the insecticides, the word is vulgar.)

Following Hayden's flawless bus boarding this morning, Dan and I had a discussion of comparisons if you will. He is correct that from the moment that Hayden wakes up in the morning everything is rush rush rush.

But I am left wondering how can it not be. I change him, cook him breakfast, start getting myself ready, get him dressed, clean up from his breakfast, finish getting myself ready, heat up his lunch, pack his backpack, make sure I actually finished getting myself ready as opposed to just thinking I did, straighten up the house (or at least enough that I won't come home feeling like I stepped right into a disaster area), get Hayden's socks and shoes on, hat, jacket, and out the door. 

Then it's my turn, and I leave for work.

From the moment that Dan wakes up in the morning his routine is more like... get himself showered and dressed, socks and shoes on, and out the door he goes to work.

After school, the antecedent mother isn't much better. Hayden comes home and he's almost always hungry. First I change him, and then try to clean him up if he's shvitzed from the bus. Then I prepare him a small meal (no need for more snacks, which he had plenty of at school).

I check his backpack for the dirty stuff-- usually that includes one shirt they had to change, and will always include his lunch container. I clean out his snack sack, too. I go through and empty both of his folders, put aside homework if there is any, and then resist the urge to re-pack whatever I can for the next day. I try to save some of my proactivity (I don't know if that's a word, but it should be) for later that night, after he is in bed. In addition to checking, and responding to, the parent-teacher communication journals. Yes, plural-- there is one book for the resource room teacher, and one for the kindergarten teacher.

At some point after school, Hayden will inevitably ask me for DD. I will inevitably turn the idea down. You see, there is one day every week that Dan works from home and can get Hayden off of the bus. That is the day that he usually takes Hayden for DD. 

Right off the bat DAD can prevent nearly any transition meltdowns, because it's the one afternoon he's home and Hayden is very happy to see him. As opposed to his antecedent mother that he sees all of the other weekdays. To top it off, Dad takes him for the doughnut. But even if he didn't, he has plenty of time to just play with Hayden.

Usually when I am done preparing Hayden's first dinner, and then going through his school stuff, it's about the time to prepare his second dinner-- which will be the first dinner for everyone else in the house.

I was hoping that after our discussion and epiphany this morning, we could come up with ideas on how to make Hayden's transition to and from school much smoother. Having more time for him before he leaves the house, and more time for him when he comes home.

I suggested that Dan take off work for two days, and we flip-flop routines. I will wake up in the morning, get myself
showered and dressed, and leave for work.

Dan can take care of the rest. I mean the whole morning routine-- actually pretend like he needs to be dressed and ready for work, and get Hayden ready for school. I even suggested he doesn't have to do his hair or makeup. I'll spare him that extra time.

To make this a legitimate flip-flop experience, he would have to leave the house and find something to do for about five hours. Not golf. Something that will wear on him a little bit-- make him slightly stressed or tired or frustrated. Then he can take a break, but he's not finished. 

He will arrive home about a half an hour ahead of the bus. He must log on the computer, and continue to do something that will require his attention. Hayden will come home, Dan will need to start on the first dinner, remember to keep checking the computer, unpack anything stinky from the backpack, log off the computer at the appropriate time, start on the second dinner, and so forth.

Let's see who the antecedent parent is now.

During this two day flip-flop routine, I can come home to a calm kid who was waiting for me-- not the other way around-- and he is thrilled to see me. He's been home for a couple of hours already, my spouse cleaned him up, fed him, and he's all settled in. Just waiting for me. He has calmed down from his busy day at school. He's happy. Most nights the house will smell like dinner (or dinners). I will put my stuff down in my office, smother my kid for a minute, and then head for the bedroom to change out of my work clothes. My adorable, lovable child will follow me and jump on the bed eager for more smothering.

I will sit down to a nice hot meal, with my happy kid and my spouse. After dinner I will go outside with my happy kid, and we'll play some more. Also this will allow us to be out of my spouse's way so the kitchen can be cleaned up from dinner. When we come back inside I will give my happy kid a bath and get his pajamas on. I'll sit down on the couch, pull the ottoman over, and put my feet up.
--- --- ---

Don't get me wrong-- it is not Dan's fault that our routine is what it is. It's not his fault that I must do this, that, and the other thing by myself every morning because he's already at work.

But my point is, I am the antecedent mother and I do not know how not to be. And clearly Hayden can sense this.

So, if there are any other parents out there with essentially two full-time jobs and a child with special needs and few self-help skills... I'm open to suggestions on how to get him on that bus, and get my weekdays back.

Wednesday, September 28, 2011

change of subject

This place could use an UPP following recent posts.

I want to record, so I do not forget, nor lose motivation on tougher days... how fantastic Hayden has been doing with his homework.

(I thought if I put the word "homework" in the title, it wouldn't seem like an UPP)

Tonight's daily assignment was a worksheet on a story about butterflies. The worksheet has four squares, each with one simple picture. They are out of sequence.

The first step is already numbered 1, and has a caterpillar egg on a leaf. Steps 2, 3, and 4 are a caterpillar, cocoon, and butterfly respectively.

I had to number them for Hayden, but I did talk with him about the steps. I asked him what the caterpillar turns into, and he said, "fly bug!" I said, "Yes! Butterfly!"

A few minutes later I asked him again, and this time I said, "Butter-" and he said, "fly! fly!" He also colored a little bit in the squares.

My favorite part was when he pulled out an Elmo coloring book with bug stickers. He went hunting in a specific bin for it-- he knew he had it, he knew where it was, and he knew it was relevant. I had absolutely no recollection of this particular coloring book!

Meanwhile, there is a sticker page in that book, and I encouraged him to share them with his classmates tomorrow.

To further add to my excitement, all of this occurred before Dan even got home. That is quite impressive because our routine has been doing homework at the dinner table. I don't really care if something he hands in gets a little bit dirty, because this happens to be a time when he listens and attends well, and participates. So I'm running with it...

Besides, it's only his second dinner. The first dinner is a small meal after school around 4ish, and the second dinner is a couple of hours later when Dan gets home and has his. (Hayden is a social eater.) 

But wait! There's more! Hayden completed part of his weekly homework at the dinner table, too!

Here are examples of some of the tasks, and our efforts modified for Hayden:

Task: Help your child think of words that rhyme with cat.
Effort: We used clues to help Hayden think of "hat" and "bat".

Task: Ask your child to tell you how 3 clothing items are alike and different.
Effort: We asked Hayden an open-ended question when he needs his hat, shoes, and jacket. He answered when he's going "outside".

Task: Tell your child a make-believe story, and have them re-tell it to you. Ask what makes the story make-believe.
Effort: Hayden told us a story about our neighbor playing golf in a green hat. He was playing golf with Dad, and Dad won the game.

Task: Help your child think of actions that animals and people can do.

Effort: Hayden told us that animals can play on our lawn.

Proud UPP moments, for sure.


Although he tried to close the bus doors before he even got on the bus this morning, he did at least get on. No Ted E. Bear overnight guest tonight, so fingers crossed for tomorrow morning...
Although, Dan gets him on the bus on Thursdays, so he'll be just fine. Hayden typically prefers to save his more colorful behaviors for his mother.
I guess I'm just lucky.

Tuesday, September 27, 2011

say cheese

Today is picture day at school, and I sure wish the only thing I had to worry about is the new mosquito bite on Hayden's face that seemed to appear some time during the night.

But I had to practically lie to him to get him on the bus this morning, and that is what I am worrying about. 

It was groundhog day all over again... he ran out to the bus, he stopped at the door, and wouldn't get on. He did not care that this was how Ted E. Bear had to get back to school. He did not care that he was wearing a very cool button down shirt for picture day. He did not care that I gave him two dollars this morning. The latter two often have a similar happy-effect on him, as a doughnut.

I pushed him up the steps while he fought me. He was mumbling a whole bunch of stuff, and at one point he said, "Pop Z come." This is when I became a bad person.

"You want Pop Z to come?"

Hayden slowed, stopped resisting me. Got a very thoughtful look on his face, and proceeded to his seat. Reluctantly.

In my own mind, I was calling myself a moron. He was now sitting on his seat, and I needed to think fast. 

"Well, remember it's picture day today..." I began, and buckled his seat belt. "So when they tell you to say cheese, you can say POP Z!"

I flew off that bus as fast as I could because I sensed his frustration setting in again.

I am already having doubts about tomorrow morning.

Monday, September 26, 2011

new day, same challenge

Hayden bolted out the door this morning when the bus pulled in the driveway-- his backpack was on, and he was ready to go!

And then just like that, he wasn't ready anymore. I was calm, and firm, and I said, "Hayden-- you are going to school on the bus today, just like you've been. You're fine, and I'm very proud of you. Your friends are waiting, and you're going to have a fun day. I will be here when you come home." 

Roughly four minutes, three falls, two sweaty people, and one tear-streaked face later... I turned around, shrugged, and spoke softly to the driver, "I'm sorry." 

He nodded, "I wish I knew how to help you," before closing the doors and pulling away.

Just like on Friday, Hayden's nervous breakdown got worse as the bus drove down the road, and turned out of sight.

Once I cleaned him up as best I could, and changed his shirt, he had stopped crying. That's when I felt a lump begin to form in my throat.

We went outside, and now he would not get in my truck. And of course a neighbor had to be walking up the road, and another one peering out their window at us. Awesome.

The neighbor coming up the street walking their dog said to Hayden, "I thought I just saw your bus?" I did not offer an explanation as to why it left without him. I was in no mood for chit-chat. At this particular point in time, I could not possibly care less if I seemed like a Bitch.

I looked at Hayden and I said, "If you do not get in the car, I will put you in there myself." 

"No I'm not!" 

"No you're not? Yes you ARE. And YES I will."

Eventually I won that struggle, and buckled him in his seat.

Before we even made it out of the neighborhood, he was quiet. And by that time, I was upset enough for both of us.

It was an overcast gray morning, and I pulled into the school with sunglasses on my face and a wad of tissues on my lap.

The bus was still out front, and so was his Aide. And his K teacher. I know he only had to drive one other boy, and the K teacher is not typically outside, so I realized immediately that they must have been waiting for Hayden.

The K teacher headed right for my truck, and I gladly let her get him out. I walked around the other side to get our spare car seat out of the back.

I handed it to the bus driver, and he agreed maybe it would help. He placed it on the bus seat, and then the Aide and the K teacher told Hayden he should make sure it's the right size. So they helped him on the bus, he tried it out, and very calmly walked back off.

(On Friday there had been a note in the communication book, that Hayden kept talking about the car seat on the bus not being the right size. Previous years, Hayden had his own seat on the bus. I just never gave it to the driver this year. First of all, there are only a couple of kids on that bus this year, and Hayden was fine so far sitting in one of the booster seats already on there. He had practice, if you will, during summer program using the car seat that was already in the van.)

When Hayden got home from school the Angels he spent his day with, sent home two things to help us in the morning.

One is a picture of a bus, with a boy in the window, and it reads:
Hayden is going on the bus.

He is going to sit in his car seat.
Hayden will be happy.

The other one is a canvas tote that Ted E. Bear travels in-- he is the kindergarten class mascot. He is allowed a sleepover in each student's home. He arrived with a journal to record a recap of his overnight experience. 

The bus driver gave us specific instructions that Ted E. Bear returns to school on the bus in the morning. Hayden seemed excited in anticipation of this.

In about 13 hours we'll find out if it worked.

I hope those Angels realize that Hayden is not the only one they're helping.