Clouds, May 2010

Clouds, May 2010

Thursday, November 28, 2013

30 thank yous

I first learned about The 30 Days of Thanks challenge via social media, & according to a USA Today article (from about 4 years ago) that is basically how it began-- with a blogger & a couple of her friends, who recognized the importance of encouraging themselves & others... & what a difference it made to focus a few minutes a day for one month, on the people, things, & experiences for which they're grateful.

I'm about a week late joining the 2013 bandwagon, but in a few weeks I will share my 30 Thank Yous on Thanksgiving:

1. The first thing I do when I wake up in the morning is open my eyes. I am thankful that I have good sight.

2. When I was a toddler I had corrective surgery on one of my eyes & when H was a toddler, he had the same surgery on both. I am even more thankful that Hayden has good sight.

3. After I wake up the second thing I do is get up. Although I dislike my legs I am equally grateful for their strength. I am thankful they've carried me-- & often my son, too-- very well.

4. That being said, I am also thankful that Hayden's legs are more like his father's.

5. (Moving on...) I am thankful for the almost therapeutic, sense of calm that I feel when I am painting. It definitely clears my mind.

6. I am so grateful throughout our home we have loving memories of my Grandma Gert, among many exquisite pieces of her hand painted china. I love this piece & she used to say it reminded her of me.

7. One of my favorite memories from my Grandma Phyllis is a pillow she knitted for me, using one of my childhood drawings of a dog as the design. I am thankful for this, & that I can pass it on to my son.

8. I am thankful for the team of people at the Institute for Basic Research in NY, & even more thankful that we live within driving distance of a fragile x clinic... period. They were one of our first stops just a couple of months after we had H's diagnosis. During the following years they were instrumental in guiding us through an appropriate Education Plan for Hayden.

9. I am thankful for FRAXA, The Fragile X Research Foundation. Our very first experience at a fragile x community event was a FRAXA Gala (The X Ball). I would like to mention that through random luck, & one of my mom's former colleagues, The Clark family personally made it possible for me & my husband to attend.

10. I am thankful for the incredible National Fragile X Foundation (NFXF), including Advocacy Day, the International FX Conferences, the LINKS Network, & much, much more.

11. I am so grateful to be a LINKS Co-Leader for the Fragile X Association of New Jersey!

12. I am also thankful for H's 15 minutes of fame at last year's International FX Conference in Miami

13. I am very lucky to have all of the family support that I have. I often feel that we never would have made it this far without them.

In fact, I am quite sure of it.

14. I am thankful for our little fragile x world. Period. I am not thankful that Hayden was born with fragile x, but I am thankful-- beyond words-- for the indescribably amazing fragile x community.

15. And also to that point, my gratitude for most of the people who work with Hayden at school is beyond measure. There are four faculty members in particular who have set the bar so unbelievably high, that I am worried I will need to be medicated* when Hayden graduates to the upper elementary school in about 2 1/2 years, & is no longer in their care.
*I should probably start now.
You can check this link out to see just how young he was when he started working with most of them: (btw, his Aide made this video when he graduated from preschool... it is beyond evident how they adore him) Hayden's Preschool Video
I know it's 9 minutes, & it's not even your kid, but I promise it will melt your heart 

16. I am thankful I am a mom. And I am even more thankful that someone calls me Mommy. I know what a privilege it is & many women-- whether they can or can not conceive-- never know this privilege. I carried my own son full term & when he was born we met a very healthy (big) beautiful baby boy... ten fingers, ten toes, two good eyes, two good ears, & a cute little nose. He thrived well from Day One & 8 1/2 years later, that certainly hasn't changed.

17. I am so thankful I am an Aunt to 2 very smart & beautiful nieces, a very smart & handsome nephew, & future Aunt to another somebody on-the-way <3 I love watching them grow up & I love being Aunt Cara!

18. I am thankful that Hayden sleeps well at night. Sleeping can be a major challenge for kids with fx, so I know what a blessing this is. Sometimes it takes him a very long time to fall asleep, but once he does he will usually stay asleep for a good 10 hours. 

19. I am thankful for the color purple because it makes me happy & I think of my grandma every time I see it (especially lavender).

20. I am thankful that I have a good head of hair. Sure I complain during summer because it is so damn thick & it gets awfully hot under there... but I am simultaneously thankful that there is so much of it. I am also thankful it does not yet require being dyed! Some women can carry a head of grey hair extremely well. I can tell by my skin tone I would not be one of them.

21. I am thankful that I have a job & that Dan has one, too. Even though my job is not exactly a career to me, I remain very grateful for the flexibility. Without this I would never be able to accommodate Hayden's needs. We have a very carefully orchestrated schedule with very little wiggle room, but what we have works.

22. In this universe of email, texting, social media, & so forth... I am quite thankful for the friends in my life who I still have actual phone conversations with. Of course spending time together is preferred, but the reality is that spending time together is often not a reality. So hearing someone's voice is definitely the next best thing.

23. But when I do have a chance to actually make plans with friends, I cherish spending that time with them. (Even the part of getting there... because I enjoy being in the car by myself & listening to whatever music I want to, on whatever volume I want to, & having the car be as windy (or not) as I wish.)

I am thankful for all of the birthday wishes! I especially love the few "old fashioned" cards I still get in the mail every year. I am definitely a sucker for snail mail-- it has just become so rare that it almost feels like a present.
25. I may not have a garage, & yes I drive a truck that is more than 10 years old, but I am thankful for my remote engine starter! (Thank you Mom & Dad)

26. I am thankful that Jenna is my sister.

I am thankful that Dan has (just about) quit smoking... he has not actually lit up a regular ol' boxed cigarette in about two months, & even his use of the e-cigarette has dwindled down to hardly ever.

28. On a less important note, I am thankful that I can paint my own nails well & I do not have to get a manicure because I do not find them relaxing. Also I find it annoying to spend the money when they're just going to chip.

29. Although technology can sometimes really piss me off I am extremely, extremely grateful for cell phones... I just liked them much better before they were smart & you could actually touch the screen without it trying to do something. (Petition to bring buttons back, anyone?)

30. We waited more than five years to hear Hayden put just a couple of words together. Five years. Eventually his speech improved well enough that he could actually get full sentences out. Although life with him is not exactly an easy one, I am immeasurably thankful for his continued progress... & I am grateful to experience what it feels like to be proud of someone you love.


Monday, November 18, 2013

treatment plan

So... my recent blog updates this Fall have included fascinating topics such as transportation issues, Halloween happenings, & iPad catastrophes.

Well, on Friday we had another follow up with the Developmental Pediatrician regarding H's medication. His anxiety is clearly heightened more than ever, since this school year began. I suspect this is mostly a result of too many changes & inconsistencies... as far as school faculty, & transportation, & so forth.

Just a side note from the medication update for a minute, though-- because although it's an important part of his treatment plan as a whole, so is working with a specialist to help determine the root of his challenging behaviors in the first place.

So yes, part of H's IEP does include behavior services. However the last two Behaviorists who were assigned to his case proved to be unreliable (at best) with scheduling. The person who was supposed to work with us over the summer either didn't show up when she was supposed to, or believe it or not actually did show up at least once when she was not scheduled to. Then there was the person who was supposed to fulfill our remaining hours this Fall, to make up for the lack of services from summer. We had a couple of home visits but then agreed to do phone consults. The last two times we scheduled phone sessions, the Behaviorist just never called at the agreed time. I would have & could have called her myself, & just initiated the conversation since she didn't... but you know what I was busy working, & being a mom, & who knows what else... even though I would have been available to speak had she remembered to contact me.

Point being if it was my job to call a client at a certain time, that would be a different story. I would certainly not be waiting for the client to call me. It is absurd that the Behaviorist never even brought up the fact that we missed our phone consult... twice! Both times I was the one who reached out to her & said, "Weren't we supposed to have an appointment?" The first time it happened, she answered yes & that she herself was busy multitasking & she was sorry we missed each other.


The second time it happened was last week. She has not yet replied to my email, but it's possible this has something to do with the fact that I cc'd our case manager, as well as the district education consultant, & also her supervisor. But really, can you blame me.

In the interim we are also trying to figure out the appropriate medication(s) to help manage some of H's symptoms of fx.

The medicine he has during the day at school has recently not been as effective as it was in the past. We need to determine if this is because the dosage needs to be increased, or if this is because his anxiety is sort of overriding everything else.

This afternoon I picked up his new Rx... I will hopefully have an update soon as far as whether or not it helps. It is not another patch-- it is a tablet, & I was given permission to crush it up & add it to his breakfast. It is supposed to be almost tasteless & when cooked with his eggs, it will hopefully be undetectable. 

In other news, I too have been working on my own sort of treatment plan if you will. Not meds (although I could use some), but rather forcing myself to be more involved. I had been feeling somewhat disconnected lately... with work, with friends, within the fragile community... just sort of all-around, feeling as if I am going through the motions of my life's routine. But nothing more.

Then, luckily, a fellow fx parent encouraged my involvement with the LINKS Network. LINKS stands for Linking Individuals Nationally in Knowledge & Support.
The LINKS Support Network is a national volunteer program of the National Fragile X Foundation, & is primarily run by parent volunteers. A few weeks ago I had the very distinguished privilege of participating in a recent NFXF LINKS Leadership Summit.

My only reluctance was over my travel anxiety (well that & the fact that I have to very carefully ration my days off from work every year, especially because I am not on a 40 hour/ per week schedule).

But the experience was truly amazing & I am so honored to be an official LINKS Co-Leader for the Fragile X Association of New Jersey. It is amazing to be able to help the National Fragile X Foundation in their mission, & give back for all of the ways that they help everyone else. 

And as I continue to help Hayden get back on track, & try to remain hopeful that the transportation issue is only temporary, & of course pray that Hayden's third & final replacement iPad is not possessed... I simultaneously hope that my increased community involvement continues to help me, too.


Tuesday, November 5, 2013

third time's a charm

So last night H's iPad went whacko on us... the screen was intermittently loading new windows without even touching it

I feel as if we are cursed, because we have already had two replacement iPads... I can not remember if the first one was the iPad which got stuck in "headphones" mode (even though we never, ever plugged headphones into the damn thing), or if it was the second iPad, which I know had an issue of the sound not working altogether.

What I do know for sure, is that I have been to the same store on 3 separate occasions to have the iPad replaced, including today, which was conveniently out of warranty. Yes you can still get a replacement when that happens, but it'll cost ya at least a couple hundred dollars... but I'm not supposed to complain, because that's half the price of the lowest model of a new one, right?

Well first of all, to get there I can not go to work. My remaining vacation hours for this year (good thing it's already November) total less than a day's worth. But after witnessing H's reaction the first two times we had iPad issues, & then being reminded last night, & once more this morning... there is no way in the universe I was about to deal with him coming home from school today & starting all over. Oh, & another fun convenience... they're on early dismissal today so I would have even less time to sort this out.

So I made the earliest appointment the Apple store would accept, drove almost 20 miles in rush hour traffic to get there (that is the closest location), walked up to their inappropriately named Genius Bar, & then handed the possessed device to a guy... who sent me to another guy... who sent me to a woman... all wearing the same shirt but standing in different parts of the store, as if not allowed to cross to someone else's domain.

First we tried the no-cost solution of updating the software, but sure enough the screen was still being manipulated by an invisible finger. So then without much choice we had to begin the replacement process. With my head hung in defeat I handed over my credit card & the lady (who made a lovely point of telling me that she still has an original first model iPad which still works fine), went to work completing the transaction.

I "signed" with my finger on various screens of various devices to allow them to erase this, activate that, pay for the other thing, not hold responsibility either thing, & agree that after 90 days we would basically be screwed indefinitely.

With the worst behind me (so I thought), I exited the store to find the very professional kid-managed kiosk where I could spend just a little more money to replace a perfectly good screen protector, because it could not be transferred to the new device. However, the kid-- I mean person-- who was supposed to be managing his little kiosk post was no where in sight. Just an empty stool, an open laptop with a black screen, & a coffee cup sitting beside it. The barely-English-speaking man at the next kiosk informed me that he was there & he should be right back.

Well, twenty minutes later he wasn't.

Why did I bother waiting so long you might ask? Well, you see, these aren't just any screen protectors... they are supposed to be the very best screen protectors (which you will still need to put your iPad case around, but that's besides the point). Once you have a fancy anti-scratch screen protector installed on one device, you save money on future installations including replacements... because this is how they talk you into paying an absurd amount for the initial screen protector in the first place. And they will remind you... it's not just a screen protector but it's two sheets so you can also protect the back of the iPad (which is very exposed to the elements underneath that 2-inch thick, 3-pound military style iPad case that you paid $70.00 for).

So I finally gave up because after I calculated how much time I would have left once I got home, & would be able to begin re-downloading all of Hayden's movies, shows, apps, etc... in time for him before he arrived home from school (which, again, is on early dismissal)... I basically realized I had to get the hell out of there fast.

But seriously... how could I go home without protecting our precious, sacred replacement #3 iPad from getting scratched?! Well, conveniently, there was a Brookstone nearby (I swear it's all an evil plot).

$20.00 more later for a screen protector which will only cover the front of the iPad & I was finally headed home.

I am writing this as I am waiting for the 3rd of 5 movies to finish downloading, & I have not even started on the shows yet. I did however get most of his apps back on.

I have less than 30 minutes to go... wish me luck because I need it right now...

And if it's not too much to ask, please say a prayer that this iPad #3 miraculously lasts until Hayden is at least 15 years old.

Thank you.


Friday, November 1, 2013

a different kind of super

This time last year most of us (in & around NJ, as well as Long Island) had already been without power for several days (ours would return by November 6th). Hayden actually resumed school before our neighborhood's electricity was even restored-- of course adding more confusion to an already confusing situation for him-- but that powerless time frame of about a week, made us pretty damn lucky compared to many others.

Nonetheless in Hayden's Parent-Teacher Journal there was a big gap... an entry on October 26th & then nothing until November 5th. They actually had a Halloween parade that day-- Hayden dressed up as a doctor. I remember speaking to another mom while we were out on the field watching all the students, & she offered up use of her washer & dryer-- their side of town had power by that time.

I first returned to the grocery store on November 7th, but even then the freezer aisles were still empty & dark. I found this cell phone pic I took that day:

So this year I was really looking forward to Hayden (hopefully) enjoying Halloween again. But on his level, mind you... I mean we may not eagerly make plans or that sort of thing because we never know how long he will last with certain tasks, but at least he can enjoy whatever festivities he wants, for the amount of time that's comfortable to him.

Superstorms aside, however, the whole concept of Halloween is not an easy one for most children with special needs. Did you know that just the part of dressing up can cause them anxiety? Or trigger their sensory issues? Did you know that the motor planning involved in going door-to-door is not necessarily natural for them? And worse, the discouragement this can cause them if someone is not home to answer the door? Did you know that not only is one neighborhood potentially too much for them, but even just one street?

So just imagine what it would take for someone like that to walk up to someone else's front door (keeping in mind they probably have social anxiety too), then knock or ring the doorbell, wait for someone to answer, then speak, then hold their bag open, put their hand in a bowl that might have many different textures in it, take one of something, & navigate back to the street potentially having to walk around other kids or step aside to let them by... then do this all over again... many times... as it gets darker outside.

Therefore when I say that as Hayden walked up to the first house by himself per his own request, & then no one answered, yet he still turned around & went across the street to another house, only to spot a smoke machine near the front door which he mistook as fire, but accepted our encouragement to continue, & followed our instructions not to walk on the lawn but to take the path, which triggered a hidden motion sensor inside of a 5-foot-tall witch, who moved & cackled at him, at which point another group of children were starting up the driveway as their parents looked on, so H reluctantly yet bravely continued towards the front door, briefly paused at the bottom of the short flight of front steps, & despite other children sort of walking around him by this point, still finished the task of accepting his very first piece of candy that night...
I can not just say, "Hayden went trick-or-treating last night," end of sentence.

Excuse me but my kid's accomplishment (yes, accomplishment) is basically comparable to the motor planning equivalent of a triathlon, demonstrating determination similar to that of a knight (btw the garb comparison here is important), while
courageously overcoming obstacles comparable to that of a survivor of I-don't-even-know what, in order to storm one of the most intimidating castles ever, & retrieve a candy reward of some sort which you won't even eat because of your food sensory issues... all for the sake of participating in something that you know other kids enjoy, so you want to enjoy it too.

Now maybe you can begin to understand where I'm coming from, when I say this is really super.

And the couple times that other children from school who happened to be trick-or-treating in the same neighborhood said, "Hi Hayden!" ... & he responded... oh, my... that part was like finding out you were nominated for something & then actually winning it.