I do not want to talk about the reasons why parents of children with special needs often go through periods of grief. I do not want to discuss that throughout any given year there is no shortage of events which might trigger this, nor explain why the holiday season is pretty up there on the list.
I could barely begin to summarize why most holiday festivities are so challenging. But I will say when our children have anxiety this not only translates into grief for the parents, but often guilt as well. Particularly on a day that we're just feeling drained or defeated... or maybe it's a a day when we question whether or not we're doing enough... or worse, a moment when we might even look up & ask why. No we did not deliberately, knowingly pass this unique gene to our children... but the fact is that we passed it to them. (Well, one of us did.)
Still, while there are some days that we wish life could be "normal", or at least calm (we would settle for calm), we also have days when our pride is immeasurable.
I am convinced-- & willing to admit-- that I might not even appreciate H's milestones & progress to the extent that I do, if they were achievements that we expected. Would I honestly feel the same sense of pride if they're accomplishments that kids are supposed to have?
For crying out loud I remember the first time Hayden successfully drank with a straw... as much as I will always remember the very first Random Acts of Kindness Award that he just earned. (And the straw thing might even make me more misty-eyed than the latter.)
--
Parenting must be one of THE most popular blog topics, but I've also noticed a trend of related themes... such as fellow parent-writers posting lists of why we are all good parents, even if our house (for example) might appear to the contrary... or our frenemies might suggest otherwise... or we don't look a damn thing like those celebrity moms when we look in our own mirror... the ones that look like they really have it together.
Then all of this made me wonder... perhaps someone ought to point out why you just might wish you had a kid with special needs like mine.
I mean that sincerely, not sarcastically. I can not count how many times someone has said something along the lines of... I don't know how you do it, or I give you a lot of credit...
We do this parenting thing because we are Hayden's parents. That's how. I do not deserve any extra credit, but here's why you might actually envy me:
1. My kid might have behavioral challenges like you have never seen in your life, HOWEVER, he literally wakes up in a great mood almost every single day. The first thing he says to me when I walk in his room is, "Good Morning".
2. Yes, by the way, 99% of the time Hayden patiently stays in his room after he wakes up... until one of us comes to get him.
3. An advantage to having a child who needs assistance with most self-help skills is that as a parent, we always feel needed.
4. I am so over the idea of my kid taking a regular, full-size yellow bus to school. You would be too if your kid was practically chauffeured door-to-door. Having a peace of mind is quite a tolerable side effect to having an IEP.
5. Oh, I'm sorry... what is an IEP? Well it might not stand for Ivy-Leage-Bound Exceptional Pupil but it is the law. Hayden's Individualized Education Plan is a thick-ass document which essentially specifies, & protects, everything Hayden needs in his learning environment.
6. Between his Aides, teachers, therapists, & so forth... my guy practically has his own personal army of superheroes. They are my sanity.
7. Do you know how many neuro-typical children do not even answer one thing they did at school during an entire week, let alone a single day? Well my kid might not put pen-to-paper but he does come home with a Parent-Teacher communication journal, & we exchange updates on a daily basis.
8. Does Hayden understand how much things cost? No. Does he appreciate an inexpensive gift any less than an expensive one? Never.
9. Yes Hayden is different. But with that, he's an interesting topic of conversation. People want to get to know him, they like him, & they remember him.
10. At the end of the day, regardless what kind of day it was, Hayden truly loves us unconditionally.
--
Clouds, May 2010
Thursday, December 26, 2013
Sunday, December 8, 2013
snowflakes
About a month ago we had our first snowfall out here in Jersey-- except it was more like a dusting than a fall.
Tonight it snowed for the second time this season & although it's once again barely a measurable amount, it is thicker. So when you look outside, especially if you're only 8, it looks impressive. Everything has a nice even coat of white.
H of course could not get out there fast enough & only wanted to shovel. At first we said no because it's very cold, it was actually still snowing, & also I was trying to cook dinner.
But as soon as the meal was at the point that I could safely step away from the stove, I told him we could go outside for 10 minutes (famous last words). Dan brought him out, got the shovels, & then I joined them.
Hayden was very happy to be shoveling. And I will say that just by pushing it along the road, he actually accumulated enough snow that the shovel had a full scoop. He wanted me to take pictures so I did (even though they were blurry because it was night time & it was still snowing).
I watched him sort of weave the shovel all over the place & make a winding-patterned path. But he is such a good little helper when he wants to be... & he looked so cute in his bright green snow hat... my little smiling snow angel...
Until it was time to come inside & he would not listen. No more angel. Just Hayden.
Anyway, fast-forward to when we ran out of threats & he finally got cold enough (I guess) that he came inside on his own. After we calmed down I showed him the pictures I took. He was enjoying this until all of a sudden he sees a tiny thumbnail ad on the side of the computer screen, for a Sears Craftsman something-or-other. So I went to the site so we could look at the tools. He noticed a workbench & said he wants the "table" for his shed but I told him it's too expensive. He begged anyway & I told him I do not have the money to spend on that.
So then he answers, "Santa does! Tell him."
He put emphasis on "him" as if I should know better. And just like that he was my innocent little angel again & all stubbornness from the hour earlier was forgotten.
From his perspective he had an excellent point (the poor guy) but I also do not have practice answering these types of questions... because my parents never had to answer mine. When I was a kid there was absolutely no mistaking where our Chanukah presents came from, & there was no jolly old bearded man flying around the world & dropping them down our (imaginary) chimney. Everything we got was a result of Mom & Dad going to the store & all of us knew this.
In this house we do have a fireplace so that part isn't an issue, but I still needed to answer Hayden about Santa's budget. So I told him that Santa already spent a fair amount of money on him & he will see everything in a couple of weeks. (I think H got a little confused because I started to decorate the house this weekend, & perhaps this made him think the big day is much closer.)
We made a Christmas countdown calendar & stuck it on the fridge-- at the end of each day, a snowflake sticker marks that we are one box closer to the square with the evergreen tree.
--
Tonight it snowed for the second time this season & although it's once again barely a measurable amount, it is thicker. So when you look outside, especially if you're only 8, it looks impressive. Everything has a nice even coat of white.
H of course could not get out there fast enough & only wanted to shovel. At first we said no because it's very cold, it was actually still snowing, & also I was trying to cook dinner.
But as soon as the meal was at the point that I could safely step away from the stove, I told him we could go outside for 10 minutes (famous last words). Dan brought him out, got the shovels, & then I joined them.
Hayden was very happy to be shoveling. And I will say that just by pushing it along the road, he actually accumulated enough snow that the shovel had a full scoop. He wanted me to take pictures so I did (even though they were blurry because it was night time & it was still snowing).
I watched him sort of weave the shovel all over the place & make a winding-patterned path. But he is such a good little helper when he wants to be... & he looked so cute in his bright green snow hat... my little smiling snow angel...
Until it was time to come inside & he would not listen. No more angel. Just Hayden.
Anyway, fast-forward to when we ran out of threats & he finally got cold enough (I guess) that he came inside on his own. After we calmed down I showed him the pictures I took. He was enjoying this until all of a sudden he sees a tiny thumbnail ad on the side of the computer screen, for a Sears Craftsman something-or-other. So I went to the site so we could look at the tools. He noticed a workbench & said he wants the "table" for his shed but I told him it's too expensive. He begged anyway & I told him I do not have the money to spend on that.
So then he answers, "Santa does! Tell him."
He put emphasis on "him" as if I should know better. And just like that he was my innocent little angel again & all stubbornness from the hour earlier was forgotten.
From his perspective he had an excellent point (the poor guy) but I also do not have practice answering these types of questions... because my parents never had to answer mine. When I was a kid there was absolutely no mistaking where our Chanukah presents came from, & there was no jolly old bearded man flying around the world & dropping them down our (imaginary) chimney. Everything we got was a result of Mom & Dad going to the store & all of us knew this.
In this house we do have a fireplace so that part isn't an issue, but I still needed to answer Hayden about Santa's budget. So I told him that Santa already spent a fair amount of money on him & he will see everything in a couple of weeks. (I think H got a little confused because I started to decorate the house this weekend, & perhaps this made him think the big day is much closer.)
We made a Christmas countdown calendar & stuck it on the fridge-- at the end of each day, a snowflake sticker marks that we are one box closer to the square with the evergreen tree.
--
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.
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.)
24. 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.
27. 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.
--
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!
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.)
24. 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.
27. 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.
(What?!)
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.
--
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.
(What?!)
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.
--
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:
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.
--
Thursday, October 17, 2013
if you can't carry it all, make 2 trips?
Well, we had the first progress meeting of the year this morning...
On the plus side, I learned that H finally raised his hand in class to answer a question (pretty huge, right?)... but equally awesome is that he got it correct! Unfortunately the teacher couldn't remember what it was so I will have to ask his Aide, but regardless it's pretty tremendous.
Also it was humorous to learn that when working in a smaller group, Hayden now speaks under his breath because he knows he can not call-out the answer. So for example, the speech therapist tells me that if he's working alongside another student & it's supposed to be their turn, he does this thing... he will lower his head & look to the side & whisper the word.
(If we each had a penny for every time we're torn between wanting to high-five this kid or correct him...)
On the down side, I should be beaming about all of these things but unfortunately we are still dealing with the whole transportation issue... which, absurdly long story short, here's where we are now:
There is an Aide on the van with H... met her once... her name is Maria... she rolls the "r" well when she says her name... H was very surprised to see a new face on the van as he was about to step inside... I could not give him a heads-up because I barely had one myself... & even so, I did not know male, female, name, nothing...
So I gave Maria-with-the-fancy-r one of H's Positive Student Profile brochures... & as I'm handing it to her I take a glance around the van, & suddenly realize they will now be short one seat in the afternoon...
There is one more kid who is not on the route in the morning, but he is after school.
Well, later on following H's progress meeting I learn that the van is making two routes in the afternoon... first they pick up one little girl & her Nurse/Aide & bring her home... during this time H & the other student are left behind at school & basically wait in the gym... then I am told within fifteen minutes the van returns (just in time for the school Aide's dismissal), & then it is H's turn to come home.
All this, because the transportation company does not have a vehicle which can accommodate everyone at the same time.
Or should I say, all this because suddenly after all these years Hayden needs an Aide on the way to & from school, because he just won't stay seated.
I may not know the root of his anxiety with this one, but I do know it's painfully contagious.
--
On the plus side, I learned that H finally raised his hand in class to answer a question (pretty huge, right?)... but equally awesome is that he got it correct! Unfortunately the teacher couldn't remember what it was so I will have to ask his Aide, but regardless it's pretty tremendous.
Also it was humorous to learn that when working in a smaller group, Hayden now speaks under his breath because he knows he can not call-out the answer. So for example, the speech therapist tells me that if he's working alongside another student & it's supposed to be their turn, he does this thing... he will lower his head & look to the side & whisper the word.
(If we each had a penny for every time we're torn between wanting to high-five this kid or correct him...)
On the down side, I should be beaming about all of these things but unfortunately we are still dealing with the whole transportation issue... which, absurdly long story short, here's where we are now:
There is an Aide on the van with H... met her once... her name is Maria... she rolls the "r" well when she says her name... H was very surprised to see a new face on the van as he was about to step inside... I could not give him a heads-up because I barely had one myself... & even so, I did not know male, female, name, nothing...
So I gave Maria-with-the-fancy-r one of H's Positive Student Profile brochures... & as I'm handing it to her I take a glance around the van, & suddenly realize they will now be short one seat in the afternoon...
There is one more kid who is not on the route in the morning, but he is after school.
Well, later on following H's progress meeting I learn that the van is making two routes in the afternoon... first they pick up one little girl & her Nurse/Aide & bring her home... during this time H & the other student are left behind at school & basically wait in the gym... then I am told within fifteen minutes the van returns (just in time for the school Aide's dismissal), & then it is H's turn to come home.
All this, because the transportation company does not have a vehicle which can accommodate everyone at the same time.
Or should I say, all this because suddenly after all these years Hayden needs an Aide on the way to & from school, because he just won't stay seated.
I may not know the root of his anxiety with this one, but I do know it's painfully contagious.
--
Thursday, October 10, 2013
please remain seated
It seems we're still having challenges with transportation compliance this year.
I mentioned this issue a couple of posts ago, & why the option of the seat belt cover wasn't such a comforting one. I may or may not have mentioned they also tried another style where the buckle can be removed by hand but it is tough to take off... kind of like a child cap on a medicine bottle.
Well, H figured out how to remove it.
I was recently discussing the issue with the behaviorist & she of course offered the rational perspective that the rest of us seem to forget... such as, preventing H from getting out of his seat is not solving the root of the problem in the first place.
Considering the fact that I am not with Hayden when he is on his way to school, it's exceptionally challenging to figure out what is prompting him to remove the seat belt & stand up when he's not supposed to. Keeping in mind, this is a new challenge as of this school year. Furthermore, although his speech has progressed considerably over the past few years & continues to improve, the fact is Hayden still has limited communication.
Something is different & we do not know what it is, but it's obviously affecting him. So the next idea came from H's teacher in the form of a short social story-- this is a popular technique for reinforcing expectations & therefore hopefully curbing behaviors, in children with special needs.
I mentioned this issue a couple of posts ago, & why the option of the seat belt cover wasn't such a comforting one. I may or may not have mentioned they also tried another style where the buckle can be removed by hand but it is tough to take off... kind of like a child cap on a medicine bottle.
Well, H figured out how to remove it.
I was recently discussing the issue with the behaviorist & she of course offered the rational perspective that the rest of us seem to forget... such as, preventing H from getting out of his seat is not solving the root of the problem in the first place.
Considering the fact that I am not with Hayden when he is on his way to school, it's exceptionally challenging to figure out what is prompting him to remove the seat belt & stand up when he's not supposed to. Keeping in mind, this is a new challenge as of this school year. Furthermore, although his speech has progressed considerably over the past few years & continues to improve, the fact is Hayden still has limited communication.
Something is different & we do not know what it is, but it's obviously affecting him. So the next idea came from H's teacher in the form of a short social story-- this is a popular technique for reinforcing expectations & therefore hopefully curbing behaviors, in children with special needs.
It's clear she put a lot of work into this (& managed to do so in a very short amount of time). The small book is nicely laminated, with binding, & even personalized with photos. Despite the unfortunate fact that my fidgety son had the thing half taken apart on the very first day he held it on the way home... we will continue to try & reinforce the lesson with him.
In addition to the social story, they have been thinking through other strategies as well. Today began the first trial run of reversing the morning route, so instead of H being picked up first he was picked up last. I suppose shortening the travel time to school could be helpful but it's too soon to tell. I will say this morning he was getting somewhat anxious, because he sensed when it was supposed to be time to leave & I had to continually distract him.
Next week we are having a progress meeting & I am grateful in the meantime everyone is continuing to put their heads together to help H. But last week there was one particular conversation which left me rather upset.
The Principal called to let me know that he too tried to talk to Hayden about the importance of wearing a seat belt & staying seated. Hayden-- in so many words-- communicated his dislike for the seat belt but also that he understood & he will try. Apparently he actually said he hated the seat belt, but it's important to note sometimes he uses the word "hate" when he does not really mean it.
For a number of reasons which I won't bother outlining, in my heart of hearts I do not ultimately believe that this has a damn thing to do with the seat belt. Never mind the fact that this is the 3rd new driver in less than two years, ever since the school switched bus companies to save money...
& we know how kids with fragile x just love changes.
But the part of the conversation that upset me was when the Principal mentioned it had been communicated to him, that Hayden was rude to the driver & rude to the nurse of another student.
rude
adjective \ˈrüd\ : not having or showing concern or respect for the rights and feelings of other people : not politeRude is basically someone who is being a jerk. Rude, however, is not an accurate way to describe someone with intellectual disabilities.
Hayden is genuine, he is kind, he is inherently gentle, & he is actually empathetic. Every one of his behaviors has a purpose & although it might not be obvious to a teacher, therapist, behaviorist, or any other specialist... & believe it or not perhaps even to the parents... there will be times when Hayden will not be able to control his emotions or reactions... despite his very best efforts, & despite the fact that it's obvious just how much he struggles to regulate his anxiety.
The name fragile x syndrome comes from a defect on the x chromosome. This interferes with the body's ability to produce a certain kind of protein. Although this protein is not needed in most parts of our bodies, one organ that does need it is the brain. This lack of protein causes a depression of the brain, but not in the popular sense of the word. Rather this is referring to something being expressed too little, too much, or just inappropriately.
That is not the same as rude. And the worst part is that even if Hayden was just some obnoxious kid who was channeling his frustration by not wanting to stay seated on the way to school, then so the F what. That wouldn't change the fact that he is just a child & something is bothering him.
I often think it's actually the rest of the world that needs to stop, sit down, pay attention beyond the obvious, & please remain seated until they can really understand what's actually going on.
---
Sunday, September 29, 2013
let's talk about x
Now that the students are about four weeks into the
new school year-- settled but not too settled-- I felt it was an appropriate
time to have my 2nd annual FX chat with H's classmates.
The case manager cleared a date & time with H's teacher, & it was set. Last year I brought a fire truck with me (thank you Holly for the idea if you see this), & focused on "different" still being fun. So for example, you might look at the fire truck & expect all of those siren noises & flashing lights... but if you take the batteries out it is still a truck & it is still fun to play with.
I also talked about how Hayden might notice very small details & also get distracted by little noises, or certain smells, & so forth... kind of like "Spidey" senses (I forget which mom to thank for this one— possibly Melissa? :) thank you...)
The case manager cleared a date & time with H's teacher, & it was set. Last year I brought a fire truck with me (thank you Holly for the idea if you see this), & focused on "different" still being fun. So for example, you might look at the fire truck & expect all of those siren noises & flashing lights... but if you take the batteries out it is still a truck & it is still fun to play with.
I also talked about how Hayden might notice very small details & also get distracted by little noises, or certain smells, & so forth... kind of like "Spidey" senses (I forget which mom to thank for this one— possibly Melissa? :) thank you...)
It was not only a great class last year because there were so many kids in the same room who knew H from kindergarten (just the luck of the draw), but also because they happened to be a very friendly, accepting, outgoing bunch of kids. One girl raised her hand to explain that her grandma can't always hear her, & another boy said he saw applesauce on Hayden's shirt. But the reason why these things are important, are because they just know Hayden to be Hayden & he's not (at all) some kid who is different to them. Like his speech therapist said, if their take-away is that he's messy then that's pretty fantastic. She is right because of all the things they could notice, well...
That brings me to my topic of focus for this year.
I wanted to discuss certain things we can't see, & things they have in common. I opened the discussion by talking about a person on crutches... I said if we saw a person on crutches, we would understand why they have a tough time walking. But what if we saw someone with a limp & they didn't have crutches, then we couldn't tell just by looking at them why they might be limping. So a little girl raised her hand & said that maybe the person hurt their foot.
I said Hayden has something that we can't see either. This is important to bring up, because by this age I’m thinking they no doubt notice something is different. But it must be confusing as hell to understand what it is... he looks just like them, but there are definitely characteristics of H which are unexpected.
I told them Hayden has something called Fragile X but he's not sick, & no one can catch it because it's not like a cold. It's just something he was born with but he's still a happy, healthy kid just like them.
Then I asked if they've noticed anything different about Hayden, but I also offered to go first (I don't think it's easy to raise your hand in response to a question like that). So I said they've probably noticed that Hayden's words sound different, but it's not because there's anything different about his mouth. I went on to say that some kids learn things very fast & some kids learn the same things, later. Each of us can do stuff when we're ready, but not before (thank you Franklin the turtle!)
The same little girl raised her hand again but she paused for a bit, so I smiled & told her it's OK & the teacher encouraged her to speak as well. So she finally said something about... still trying to figure out what he is saying most of the time. I nodded & agreed with her, & said it's great that she tries to listen. Then I added that maybe they've noticed sometimes he is very active & moving a lot. But again, this is not because there's anything different about his arms or legs.
However, Hayden might either be excited over something or just ready for something to be finished... but either way, waiting can make him jumpy. Then I asked them what are some things they like to do at school, & nearly every answer had to do with working together, or playing at recess, but overall being with their friends.
I reiterated how much Hayden likes seeing all of them every day, & that he also likes when other people are happy to see him too.
Then I asked them what are some things they like to do at home when they're playing outside, & many kids raised their hand & said they like playing with their neighbors. Hayden knows some of the kids in our neighborhood, too, so I said he likes that as well. One kid said his neighbor has a trampoline in their yard, & I said those are great & Hayden has one, too!
There was not one thing that anyone said, which I couldn't follow up with "Hayden likes that too" or "Hayden does that too"...
So then I asked them what are some things they like to do at home when they're not outside, & many kids raised their hand & said TV, movies, video games, & one girl said playing cards. So I said that Hayden likes watching TV too, & although he doesn't play video games he does like to play on his iPad.
In this year's talk as well as last year's, I told them that Hayden not only learns from his teachers but also he learns from them when they make good choices (another nod to a fellow FX parent). And that even when it seems like he's not looking at them the same way we look at each other, he is still listening & paying attention.
I also brought the book with me again, "Special People, Special Ways", & this year the kids commented on its rhyming message which they seemed to enjoy.
Last year I handed out stickers when I was done, but this year I had them wrapped in little cello tubes with a Halloween pencil. And once again I asked the teacher to send my flyer home in the student's folders:
Next year is 3rd grade & all (gulp) so I’m thinking my little chat will really be discussion-driven at that point. Ideally the kids will almost take over for me as the years go on. All I know is that when I was a kid if someone was different we were rarely, if ever, told why. I don’t remember being encouraged to include others. It saddens me to think that we often kept our distance simply because no one told us otherwise. I never want a kid to look at H & be confused, although I know that’s a tough one to prevent… but at the very least I want them to know (1) it’s OK to interact with him, (2) they should interact with him & (3) let them get to know him, so they know how to interact with him.
It
is true you can not just catch fragile X like a cold, but it wouldn't be so
terrible if some of the characteristics were
actually contagious... such as the fact that H does not judge others & he
assumes the best in them.
Which is exactly what he deserves in return. Maybe that's really all I need to say.
Which is exactly what he deserves in return. Maybe that's really all I need to say.
---
Saturday, September 28, 2013
fasten your seat belt
About a week ago, on one completely unassuming morning, I was waiting for the van driver to bring H back home. Yes, you read that correctly. I was waiting for Hayden to arrive back home, a short while after he had been picked up to go to school. I would then have to finish getting ready & take him there myself, which would inevitably make me late for work.
So I actually had to sit down & send an email to my boss that morning, explaining why I would not be at the office on time.
Because minutes after H left for school that morning, I was just about to get in the shower when the phone rang. The driver proceeded to tell me that she had to pull over. Apparently Hayden took his seat belt off & would not stay seated. They had not even reached the main road yet, so basically the van was stopped near the foot of our neighborhood which is about a mile away from our house.
Unable to keep going or even turn around since he wasn't buckled in (& obviously wouldn't let her buckle him in), they were basically stuck. She left a message for her boss & was awaiting approval to bring him back home.
There were endless concerns running through my mind at that point...
...so now what? What the hell am I supposed to do? How long are they going to sit there? I'm going down there... am I allowed to go down there? Does she really have to wait to talk to her boss before she can turn around? WTF... What if this keeps happening? He already has a one-on-one Aide when he's in school & now he's going to need one just to get there?! Oh, gosh... I do not even want to begin advocating for that... Oh shit... I need to text his Aide so she knows he's going to be late... What time is it anyway? Well that's great... Now his whole day is going to be thrown off... I can't keep him home... I have to get to work... This sucks I didn't even shower yet & it is already getting so late... His entire schedule today is really going to set him off on the wrong foot at this point... Can I just drive down the hill to go get him myself? Would he even get out of the van? I would have to drive him back to the house though... He would definitely freak out... he would want to go straight to school... I can't drive him to school like this... I have to walk him inside...then I'd have to come back home anyway to get ready for work... I really don't have time for this... Friggin nerve wrecking... are they really just sitting there? Still?!
When the van pulled back in our driveway however many minutes later-- I am not even sure-- there was Hayden of course sitting very calmly in his seat. I am guessing his sudden change in behavior was some sort of defense mechanism. But now that my nerves were slightly settled as he returned home, my only mission was to finish getting ready & get the hell out of the house in record time.
It wasn't until we were finally on our way to the school when the man from the transportation company called (i.e., the driver's boss). He was very anxious & concerned, claiming that the school told him, that I saw the van pulled over on the side of the road with Hayden still inside the vehicle. After I clarified this dangerously misleading statement, & reiterated that I was the one who insisted the van driver bring Hayden home instead of them just sitting there as more & more time passed... I felt like choking someone.
How far back do I go? Because last year was the first year that this transportation company became part of the equation. Prior to that-- for years & years prior to that-- the district used a different transportation company & it was always the same driver. Did we ever have any difficulties before? Yes. Have there been more since this then? Absolutely. Let's start with the fact that Hayden used to get attendance awards up until last year, & after that the only consistency was his tardiness.
Or maybe I should choke the people who accepted the bid from this transportation company? Do I blame them? Because if I am going to blame them, then I ought to blame the Governor. Isn't he the one that started the budget cuts which cost us things like... a Child Study Team (which is now outsourced, & every friggin year we have a new friggin case manager)...
Or do I blame Hayden's special needs? Because if it weren't for his special needs then how could I be affected by any of these exhausting, frustrating circumstances?
Later that day when he arrived home after school, do you want to know what the driver said to me? Well I'll tell you anyway. She picked up a little square-shaped plastic piece for me to see, & said they used it on the way home & that it worked like a charm.
I realized it was something which would prevent him from unbuckling his seat belt. "How do you get it off?" I asked.
"Well I just used a pen," she said, "but I'll need something better."
"Oh, so it can't even come off without using something like that? What if heaven forbid there's an accident?"
She didn't answer right away but I continued, "I just need to think about this & figure out the best way to handle it. I obviously want him to be safe & worry about him not being seated & buckled in, but now I don't know what worries me more..."
That Monday when he was picked up, she showed me that in case of emergency she has a seat belt cutter. I didn't really get a good look at it but I saw it near the steering wheel. Is it even realistic that just anyone would know what that was?
I think it's obvious to say that none of this was making me feel any better. It's been about a week since the incident & so far just the threat of that little plastic piece seems to be keeping him well-behaved, but that's probably not healthy either.
And there I go again wanting to choke someone. (I should probably avoid mirrors).
But alas that is not what happened. Instead I spent the week focusing on the next thing... preparing for my 2nd annual FX talk with Hayden's classmates.
Summary blog to follow soon...
---
Friday, September 20, 2013
"you late"
Have you heard about this one?
Coca-Cola, the makers & distributors of Vitamin Water, had a recent promotion which involved bilingual word-play on the inside of their bottle caps. One such word combination did not fare so well & actually printed with "YOU RETARD" under the cap.
Just to quote the explanation offered by news coverage:
"Representatives for Coca-Cola have since stated that the language inside of the cap was the product of a competition pairing one random English word with a second random French word. In French, 'retard' means 'late' or 'delayed'. 'The word's English connotation was missed during the review process,' said a spokesperson"
A bottle of the Vitamin Water Zero displaying the words "YOU RETARD", was opened by a young lady from Canada, who happens to have a sister with cerebral palsy & autism.
Click here to read an article about the offensive bottle cap.
Naturally the father of the young lady who discovered this bottle cap, composed a complaint letter to Coca-Cola-- including a pledge to boycott their products for life.
So far, Coca-Cola has issued an apology directly to the family & according to online articles, they are also posting an apology via social media.
Well then, I guess we can all move on now. Thank you, Coca-Cola, for issuing a statement & an online apology via Facebook & Twitter.
The thing is I actually understand quite a fair amount about quality control, & the workflow involved in releasing & printing shelf-ready artwork. For nearly ten years I have been part of a global company which specializes in packaging (among other areas of production). Furthermore, for the majority of those ten years I had direct involvement in quality control.
Although Coca-Cola is not one of the brands I worked on, let alone Vitamin Water specifically, it easily could have been. I mean literally-- because there are other divisions of our company under which Coca-Cola has been a client.
(Just a side note, none of our locations had any involvement whatsoever in the production of these Vitamin Water bottles or bottle caps.)
The American public-- & Canadian public for that matter-- are well aware you are not the first company to make a colossal mistake, & you will not be the last.
I understand your claim about the French meaning of the word "retard". Yes, this word pertains to lateness, delay, hindrance, hitch, hold up, or lag.
I have a serious problem with the fact that you issued a statement to explain how "YOU RETARD" was "missed during the review process".
This is what you have offered to the family of the young lady who discovered the bottle cap? An apology, an explanation of the production process, & the reassurance that this was a mistake during the review process?
Even if all parties involved in your "review process" were not thinking about the bottle cap phrase outside of its French context, this still doesn't make sense because it's not grammatically correct. Regardless, I just don't believe you because there are too many check points involved.
Please. Over the years I have proofed everything from shipping containers down to the individual foils that chocolate pieces are wrapped in. I have checked every space, every period, every dotted "i", every apostrophe, & every comma.
The parties involved who obviously threw a blind eye to this, at least need to own up to the mistake. Please spare us from further insult by claiming it was a genuine oversight.
I guarantee there must have been people involved in the production process who thought this was funny. Would you have issued the same apology if the bottle cap said "YOU NIGGER" or "YOU PUSSY"? I can just guess your hypothetical excuse on the latter.
I have a much better idea than issuing an apologetic statement.
How about a different idea for a new promotion? How about designing bottle wraps to support Autism Speaks®? Or MyChildTM of CerebralPalsy.org? Out of respect for the Loates family out of Alberta, Canada, those would be my initial suggestions.
On a more personal note, there are also organizations which support education & research funding for Fragile X Syndrome (FXS)... such as the NFXF (National FX Foundation) or FRAXA (Fragile X Research Foundation)....
Fragile X is the most common inherited form of intellectual impairment & the number one known cause of autism. Approximately one million Americans carry Fragile X, or are at risk for developing a Fragile X-associated Disorder. The research within the FX community even has the potential to benefit people affected by Parkinson's Disease. Furthermore, the gene & protein responsible for causing FXS is not only a leading candidate in the search for the causes of autism... but schizophrenia as well.
You could do a whole friggin campaign (pardon my French) using the NFXF or FRAXA logos... they're colorful & attention-grabbing... really... let me know.
I can put you in touch with the right people to make it happen. Just saying.
We could even go bilingual with this.
--
Coca-Cola, the makers & distributors of Vitamin Water, had a recent promotion which involved bilingual word-play on the inside of their bottle caps. One such word combination did not fare so well & actually printed with "YOU RETARD" under the cap.
Just to quote the explanation offered by news coverage:
"Representatives for Coca-Cola have since stated that the language inside of the cap was the product of a competition pairing one random English word with a second random French word. In French, 'retard' means 'late' or 'delayed'. 'The word's English connotation was missed during the review process,' said a spokesperson"
A bottle of the Vitamin Water Zero displaying the words "YOU RETARD", was opened by a young lady from Canada, who happens to have a sister with cerebral palsy & autism.
Click here to read an article about the offensive bottle cap.
Naturally the father of the young lady who discovered this bottle cap, composed a complaint letter to Coca-Cola-- including a pledge to boycott their products for life.
So far, Coca-Cola has issued an apology directly to the family & according to online articles, they are also posting an apology via social media.
Well then, I guess we can all move on now. Thank you, Coca-Cola, for issuing a statement & an online apology via Facebook & Twitter.
The thing is I actually understand quite a fair amount about quality control, & the workflow involved in releasing & printing shelf-ready artwork. For nearly ten years I have been part of a global company which specializes in packaging (among other areas of production). Furthermore, for the majority of those ten years I had direct involvement in quality control.
Although Coca-Cola is not one of the brands I worked on, let alone Vitamin Water specifically, it easily could have been. I mean literally-- because there are other divisions of our company under which Coca-Cola has been a client.
(Just a side note, none of our locations had any involvement whatsoever in the production of these Vitamin Water bottles or bottle caps.)
The American public-- & Canadian public for that matter-- are well aware you are not the first company to make a colossal mistake, & you will not be the last.
I understand your claim about the French meaning of the word "retard". Yes, this word pertains to lateness, delay, hindrance, hitch, hold up, or lag.
I have a serious problem with the fact that you issued a statement to explain how "YOU RETARD" was "missed during the review process".
This is what you have offered to the family of the young lady who discovered the bottle cap? An apology, an explanation of the production process, & the reassurance that this was a mistake during the review process?
Even if all parties involved in your "review process" were not thinking about the bottle cap phrase outside of its French context, this still doesn't make sense because it's not grammatically correct. Regardless, I just don't believe you because there are too many check points involved.
Please. Over the years I have proofed everything from shipping containers down to the individual foils that chocolate pieces are wrapped in. I have checked every space, every period, every dotted "i", every apostrophe, & every comma.
The parties involved who obviously threw a blind eye to this, at least need to own up to the mistake. Please spare us from further insult by claiming it was a genuine oversight.
I guarantee there must have been people involved in the production process who thought this was funny. Would you have issued the same apology if the bottle cap said "YOU NIGGER" or "YOU PUSSY"? I can just guess your hypothetical excuse on the latter.
I have a much better idea than issuing an apologetic statement.
How about a different idea for a new promotion? How about designing bottle wraps to support Autism Speaks®? Or MyChildTM of CerebralPalsy.org? Out of respect for the Loates family out of Alberta, Canada, those would be my initial suggestions.
On a more personal note, there are also organizations which support education & research funding for Fragile X Syndrome (FXS)... such as the NFXF (National FX Foundation) or FRAXA (Fragile X Research Foundation)....
Fragile X is the most common inherited form of intellectual impairment & the number one known cause of autism. Approximately one million Americans carry Fragile X, or are at risk for developing a Fragile X-associated Disorder. The research within the FX community even has the potential to benefit people affected by Parkinson's Disease. Furthermore, the gene & protein responsible for causing FXS is not only a leading candidate in the search for the causes of autism... but schizophrenia as well.
You could do a whole friggin campaign (pardon my French) using the NFXF or FRAXA logos... they're colorful & attention-grabbing... really... let me know.
I can put you in touch with the right people to make it happen. Just saying.
We could even go bilingual with this.
--
Wednesday, September 18, 2013
sorry for laughing
So here I am at 10PM on a school/ work night, folding the umpteenth load of laundry this week, & trying to figure out how many pairs of pants H has that currently fit him.
At least twice a year he gets stuck in between sizes when the smaller pants are just too short, & the next size pants nearly fall as he walks. Sometimes I find slim fits that hold him over for a few months, but I hesitate to buy too many because they will not fit him for very long.
But the backup pairs of pants are particularly inevitable during the school year, because the last thing a parent of a child with specials needs wants to be... is unprepared. Yes my child is 8 & yes I make sure that he has backup clothing at school-- including underwear, pants, & there is a spare shirt in his backpack every day as well.* He is sometimes just plain clumsy, or perhaps unable to communicate if he has a stomach ache, or as the Aide sometimes writes on the plastic bag: "bad aim". Whether he trips during recess, gets carried away washing his hands because he loves playing with water, or gets applesauce down his shirt because he is not paying attention, or like today when there is clearly something funky going on with his poor tummy... we are prepared to ensure Hayden is clean, comfortable, & presentable.
(*By the way I'm a tad sensitive about this kind of stuff, so just a side note... if you're not mature enough to handle this information, or it's the only thing you're going to take away from my blog because you're judgemental, then please do us both a favor & move on to the next one. Seriously, click the button at the top that says "Next Blog>>" )
For the rest of you who get my point about the pants, as you were...
So yes, I am counting pants & figuring out which ones should go back to school. But I soon realize there are definitely a pair or two missing. I check the washing machine & dryer once more, & then wonder if they're already in his closet. And because I am a crazy person & I simply can not let this go until the morning, I make the stupid decision to sneak into my peacefully sleeping son's room.
One thing you should know about H getting to the point that he is actually peacefully sleeping, is that prior to that we usually have the battle of the iPad. Trust me I could write a whole chapter on methods for correcting difficult behaviors, especially in children with special needs... yet we still have no shortage of these struggles.
One consistent part of our routine is giving him a 10 minute warning before lights must be completely out. Tonight was just like many other nights, & when those 10 minutes were up he was pretty angry. But also like many other nights, before long he was asleep anyway.
So, back to breaking & entering into the sleeping child's room...
By the glow of a nightlight I carefully open his closet & begin surveying the jeans situation. I suddenly hear H take a short breath & realize I startled him.
Aside from the cursing rant in my own head because he was definitely in a deep sleep just seconds ago, I start to say, "Ssh, it's Ok-" but before I can even get the words out...
Hayden sits up, forcefully throws his right arm in the air, points towards the door with an open hand, & exclaims, "ten minutes!"
Poor kid. Even in his sleep he is thinking of that damn iPad.
--
At least twice a year he gets stuck in between sizes when the smaller pants are just too short, & the next size pants nearly fall as he walks. Sometimes I find slim fits that hold him over for a few months, but I hesitate to buy too many because they will not fit him for very long.
But the backup pairs of pants are particularly inevitable during the school year, because the last thing a parent of a child with specials needs wants to be... is unprepared. Yes my child is 8 & yes I make sure that he has backup clothing at school-- including underwear, pants, & there is a spare shirt in his backpack every day as well.* He is sometimes just plain clumsy, or perhaps unable to communicate if he has a stomach ache, or as the Aide sometimes writes on the plastic bag: "bad aim". Whether he trips during recess, gets carried away washing his hands because he loves playing with water, or gets applesauce down his shirt because he is not paying attention, or like today when there is clearly something funky going on with his poor tummy... we are prepared to ensure Hayden is clean, comfortable, & presentable.
(*By the way I'm a tad sensitive about this kind of stuff, so just a side note... if you're not mature enough to handle this information, or it's the only thing you're going to take away from my blog because you're judgemental, then please do us both a favor & move on to the next one. Seriously, click the button at the top that says "Next Blog>>" )
For the rest of you who get my point about the pants, as you were...
So yes, I am counting pants & figuring out which ones should go back to school. But I soon realize there are definitely a pair or two missing. I check the washing machine & dryer once more, & then wonder if they're already in his closet. And because I am a crazy person & I simply can not let this go until the morning, I make the stupid decision to sneak into my peacefully sleeping son's room.
One thing you should know about H getting to the point that he is actually peacefully sleeping, is that prior to that we usually have the battle of the iPad. Trust me I could write a whole chapter on methods for correcting difficult behaviors, especially in children with special needs... yet we still have no shortage of these struggles.
One consistent part of our routine is giving him a 10 minute warning before lights must be completely out. Tonight was just like many other nights, & when those 10 minutes were up he was pretty angry. But also like many other nights, before long he was asleep anyway.
So, back to breaking & entering into the sleeping child's room...
By the glow of a nightlight I carefully open his closet & begin surveying the jeans situation. I suddenly hear H take a short breath & realize I startled him.
Aside from the cursing rant in my own head because he was definitely in a deep sleep just seconds ago, I start to say, "Ssh, it's Ok-" but before I can even get the words out...
Hayden sits up, forcefully throws his right arm in the air, points towards the door with an open hand, & exclaims, "ten minutes!"
Poor kid. Even in his sleep he is thinking of that damn iPad.
--
Sunday, September 15, 2013
hayden's shed
H & Pop Z spent a greater part of the summer building a shed.
They literally worked through some days of record-breaking heat & even rain. But Hayden loved learning how to use new tools & Pop Z loved spending time with his #1 guy.
However, we never really had a big reveal because H was involved in the process from the beginning. Still he was very happy to have all of his things in there-- a tractor, 2 lawn movers, leaf blower, shopping cart, wheelbarrow, hand truck, gas pump, bike, snow shovel, etc.
...& today we added his old tool bench which had been collecting dust in the basement.
So while he was out of the house, I had about an hour to begin the makeover. I cleaned his old table, put the chairs in, put up some cars pictures, a few feet of racetrack wall decals, & then got the camera ready for the big reveal:
(Pardon the few inappropriate words... he literally can not control his language sometimes when he is very excited... one of the many side effects of FX...but he was genuinely very happy)
Click the blue link to see his reaction :-)
Hayden's Shed
--
Tuesday, September 10, 2013
cheat sheet
Consider this blog post the CliffsNotes version of back-to-school info...
(Btw, any links in this post will automatically open in a separate window so you will not lose your place :) )
If you have a child with an IEP or 504 Plan & the new school year also means new teachers & new classmates, at least some portion of this will likely be very helpful to you.
My first suggestion would be to listen to the webinar hosted by two LINKS Leaders (& moms) from the National Fragile X Foundation (NFXF)... it's called "Let's Talk!" & they cover many helpful strategies for any age student.
For even more information, you can also view the NFXF Back to School Online Tool Kit
Under the Contents header of the Online Tool Kit, you'll notice the very first section is titled "Positive Student Profile". Here is an example of one of these handy cheat sheets for anyone who works with your kid, to have:
At back-to-school time, following the lead of other parents in the FX community, the top 3 things I have found to be most beneficial are:
(Btw, any links in this post will automatically open in a separate window so you will not lose your place :) )
If you have a child with an IEP or 504 Plan & the new school year also means new teachers & new classmates, at least some portion of this will likely be very helpful to you.
My first suggestion would be to listen to the webinar hosted by two LINKS Leaders (& moms) from the National Fragile X Foundation (NFXF)... it's called "Let's Talk!" & they cover many helpful strategies for any age student.
For even more information, you can also view the NFXF Back to School Online Tool Kit
Under the Contents header of the Online Tool Kit, you'll notice the very first section is titled "Positive Student Profile". Here is an example of one of these handy cheat sheets for anyone who works with your kid, to have:
At back-to-school time, following the lead of other parents in the FX community, the top 3 things I have found to be most beneficial are:
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