Monday, April 27, 2009

"you haven't done anything with your blog"

I have to share this hilariousness:
video

In other news, I'm having some concerns about Punkin's anxiety level, which seems to have skyrocketed in the past week. I think it's been building for a while, but now the symptoms are harder to ignore. Like this:

video

He was doing it so long and so loud during carpet time today that one of his classmates hit him on the leg -- but he didn't notice! And he didn't notice his teacher calling his name, either. Sigh. Poor Punkin. I put a call in to Dr. Berry-Kravis (neurologist at Rush FXS Clinic) to see what she says.

Thursday, April 23, 2009

only a burger and duck tales could right this wrong

So, tonight was Family Fun Night at our local Children's Museum. Today was also the day I needed to pick up some Pampered Chef orders and the day we had OT with a substitute OT at a later time.

I was feeling rather smug that the universe had aligned in such a way that I was able to leave work, pick up the orders, drive to OT, and then drive to the museum. Everything was generally in a row heading east, and dinner was even provided at the museum, which is practically across the street from the OT's office. I couldn't have planned it any better; we never even had to go home between events!

Or, as Punkin would say, "WE NEVER EVEN HAD TO GO HOME BETWEEN EVENTS!!!"

He loves the museum, but after five minutes of playing he wanted NOTHING to do with that place and nothing to do with the pizza. There were tears, there was shaking of the hands, there were pleas for "car!" and "movie!"

In the end, I think too many things in the day were wrong: he didn't get to go eat a cookie with Miss Kathy this morning, we went to the mall instead of going home right after school, we then went to the OT -- a different OT, and then we went to the museum. Where they STAMPED HIS HAND CAN YOU BELIEVE THE INSANITY? And then -- THEN he saw all these adults who are supposed to live at school and not at the museum.

And then he smacked me when he remembered how he barely saw me Sunday and Tuesday and how he really just wanted to gotothecaralreadythankyouverymuch. (Maybe he thought I was going to leave him there?)

Seriously, guys, he pushed me out of the room with the pizza. Piles and piles of pizza. PIZZA.

Wednesday, April 22, 2009

we love food, and we love opa

This morning was "Pancakes with Pop" at our preschool. Since many of our kids don't have "Pops" around, we invited any male family member or friend to come eat breakfast with their preschooler. Opa came for Punkin. It was so cute when he walked into the room.

"Opa! Bye, mom! Truck!" He thought Opa was coming to get him! After we explained that everyone was staying at school, they headed downstairs for some yummy school food. Apparently he realized halfway back to his classroom that Opa wasn't staying for the entire day. This caused some discontent, but everyone recovered nicely.

THEN, this evening I was craving pizza, per usual, and complained via text message to Oma about it. A little while later, Opa called and told me to preheat my oven! Mmmm. Unecessary calories never tasted so good.

So, Opa gets the award today. For what, I don't know. Food Surprises?

Monday, April 20, 2009

stuff and stuff

i promise i will write again soon. here are a few updates until then:

i was a little unclear in my medicaid post. there is more than one kind of waiver, not just one for those who are intellectually disabled. i think i made it sound that way. i forget that my audience goes beyond the fragile x community. in iowa there are five kinds of waivers: ill and handicapped, mental retardation, AIDS/HIV, elderly, and brain injury.

my friend is coming friday!!

my cousin is doing well after having gall bladder surgery a week and a half ago. your prayers are powerful!

speaking of prayer, punkin, oma, and i went to a potluck at church to wrap-up a study we did about prayer. we left a little early because someone was break-dancing on my lap. at some point in the day, the meds DO wear off.

i had a retinal migraine on friday. i didn't know what it was when it happened, so it was a tiny bit nerve-wracking because i couldn't see. basically, i had partial vision loss for about 15 minutes and then a lot of pressure in my head and neck for the rest of the day. there wasn't much pain, so i'm lucky there. no plans to do anything about it at this point unless it keeps happening. the eye doctor was really nice. but now every time i feel pressure build up behind my eyes i think it's going to happen again. it's happened twice before, but this time was by far the worst.

i spelled neck wrong the first time (kneck). srsly?

i am going to watch The Hills in my big girl bed and doze off. ah, the joys of "reality" tv.

Wednesday, April 15, 2009

text messages

(Last night) Punkin has a fever. Going to urgent care. Fun, fun!

Nurse is nicest lady ever.

It's the doctor we know!

He has strep.

The only reason I got worried was because he wouldn't eat his Hamburger Helper. He's still being destructo boy for the most part.

I accidentally got fat free shredded cheese. Sick! It tastes like rubber.

(Today) Sorry I missed your call. Phone buried in the laundry. Right now two of us need a nap and one of us is fighting it.

medicaid

I found a really good site that explains Medicaid and the Medicaid Waiver Program (for people with disabilities). I don't know who all reads this blog, but if you have a child with special needs or if you know someone with children who have special needs, you might want to consider applying. It does vary state-to-state, but from what I understand, every state has an exception to the low-income guidelines for people with disabilities.


I was told a variety of things before I applied for the Waiver that were just flat-out wrong. Now, like I said, this varies by state, but I think there are a few common misconceptions that need to be outed. First, you may be told that the list is a mile long and it will take years to be approved. Apply anyway! I was told that; it took two weeks.

Second, you may be told that your income prohibits you from qualifying. There are two parts to Medicaid -- Medicaid for low-income families and Medicaid for people with disabilities. In Iowa, the CHILD'S income determines whether or not they qualify for the Waiver. And since most children don't have an income, they will most likely qualify. I think there are some families who may be required to pay a co-pay, but I haven't met that family. Even Punkin has an "income" of child support, and he still qualifies no problem.

Third, you may think that it's "just health insurance." But, it's much more than that. It is respite (ie: babysitting!). It is specialists. It is community living programs. It's private therapy and phychologists and the Fragile X Clinic. And many times, it's at no cost.

Lastly, I was told that I had to apply for Supplemental Security Income (SSI) before I applied for the Waiver, and that's not really true. The thing about that is SSI will determine whether or not your child is disabled -- which took two years in my case -- and having that label makes qualifying for the Waiver easier. BUT if you can get a report from a psychologist with an IQ score and functional behavior, it's like a fast-track to acceptance. (Let me warn you that reading said report may require someone nearby with hugs, tissues, and ice cream.)

So, there's me on my soap box for today. I've been reading alot of stories lately about families who have lost their HOMES because of medical bills for their special-needs children and it makes me sick that not one doctor or teacher or social worker gave them information on state aide. (Or, they gave them the wrong information.)

If you Google 'Medicaid Waiver' and your state, you should be able to find some info. Otherwise, call your local Department of Human Services and bug them until someone gives you a number to call. Okay, you might not have to bug them, but I did. I had a social worker at the time because I was receiving Medicaid based on my income, but she couldn't tell me ANYTHING about the Waiver. I mean, she looked like I asked her to fly me to the moon.

Okay, really, I'm done now.

Updated: I was a little unclear in this post. There is more than one kind of Waiver, not just one for those who are intellectually disabled. I think I made it sound that way. I forget that my audience goes beyond the Fragile X Community. In Iowa there are five kinds of Waivers: Ill and Handicapped, Mental Retardation, AIDS/HIV, Elderly, and Brain Injury.

Tuesday, April 14, 2009

answers

The t-shirts below were purchased at the National Fragile X Conference this past July. They don't sell them on their website, so I'm not sure where they originated. I know that Cafe Press has a feature where you can design your own shirt. The front of this one says, "Got Fragile X?" and the back says, "1 in 250 women and 1 in 750 men are carriers of the gene that causes Fragile X. www.fragilex.org."

Therapy Putty, or Theraputty is more like silly putty than Play-Doh. It comes in different resistances and is meant for hand-strengthening. I like it because, aside from the remote control incident, it has been very clean. Punkin really likes to rip paper, and this is a good alternative. It's pretty cheap, too. And Punkin's is glittery. (Woooowwww!) There are some that smell, but Punkin's has no odor.

Monday, April 13, 2009

at least it's not a bodily fluid?

Theraputty, meet remote; remote, meet Theraputty. (Also known as Therapy Putty -- Google it, as there are many places to buy it online.) Punkin LOVES this stuff!

like our matching t-shirts?



video

He only wanted the fruit snacks!

Saturday, April 11, 2009

Happy Easter!! We are going to see family and will be back late Sunday night. I will share photos, I promise. In the meantime, try to solve this little riddle for me. I have seen three people (all male) at the YMCA working out in jeans.  Srsly? One of them was even wearing loafers!

Speaking of the Y, I am apparently doing something wrong and destroyed my back. Two chiro visits later, I am feeling much better, but am afraid to touch the weight machines again!

Wednesday, April 8, 2009

there's a mouse in my house. i want to be all, "but it's probably cute like ratatouille." but it's not.

update: the crazy noise i was hearing that first made me call opa and sheepishly admit that, yes, i DID want him to come over and check it out, was not a mouse -- or a raging raccoon like i originally thought. it was actually my kitchen timer losing its battery power! but even opa -- the brave opa who searched inside my cabinets and went out to buy mousetraps -- admitted it sounded like a raccoon. and since he did find mouse droppings under the sink, we put a trap out. well, HE put a trap out. i hovered in the corner.

honestly, though, i'm not sure i ever cleaned under the sink when i moved in. so the evidence may be outdated. and that is what i am telling myself, because otherwise i will never be able to sleep.

Tuesday, April 7, 2009

he smiled, he touched him, he said, "no"



My name? Why, it's Ducky. Don't you recognize me? AHEM.





IMPOSTER!! IMPOSTER!!






MEEE? I'm soft. I'm YELLOW. I have beak and adorable wi...




Your wings? Your GIANT wings? And your tiny beak? How's Punkin supposed to chew on NOTHING? Do you SEE me rolling my hand-embroidered eyes? You are at best a distant cousin and at worst an IMPOSTER.





I am SOFT beyond belief. AND I'm affordable.





You don't have dots, AND I am a rarity that costs $45 on eBay.





I have tabbies. And a SHINY side.







A shiny...? Oh, whatever -- he'll never chew on that miserable beak!



(I bought a new Ducky; he's not convinced.)

Monday, April 6, 2009

i canNOT believe i never shared this

So, I think it was two weeks ago that I decided to take advantage of our new YMCA membership and break out the swimming suits. As soon as Punkin saw his swim diaper, he stood up, stripped naked, and turned off Duck Tales.* "Wimming? OTAAYY!"

It was REALLY cold outside, so everyone at the Y must have thought we were crazy, and there were A LOT of people at the Y that day. WOW. Funnily, though, only two of them were also in the pool....

Anyway, no one under the age of 18 is allowed in the regular locker rooms, even with adult supervision. So that means we were relegated to the Family/Special Needs Bathroom. The floor was wet, and the lockers were in the hallway outside the room. So, I delicately piled all of our clothes on a wooden stool while attempting not to touch the floor as much as possible. *Shudder*

Eventually I succumbed to the sogginess and stuffed our belongings in a locker and walked into the pool room, which, strangely was called something else entirely that I can't remember because I've never read that word before. I almost didn't know what it was; I stood, befuddled, until my reason insisted that we were, in fact, standing in front of the correct door.

We walked in and Punkin almost walked/fell into the water as if it were one solid surface. First heart attack. We climbed into the water. COLD water; second heart attack. I looked around. No towels; third heart attack. I SWORE the lady on the tour told me they had towels.

I decided to ignore the towel issue and enjoy Punkin's feet pressing HARD against my belly. He hates dangling his legs, especially in the water, and insists he touch the bottoms of his feet ouagainst my body at all times. Something about proprioceptive input, I think. I found some pool toys and we threw a plastic fish and fetched it over and over and over and over again.

This grew old after about 30 minutes and I called it a day. This was when I remembered about the towels.

Imagine two very cold, very wet individuals, one of them four years old with huge blue eyes and hair that desperately needs a cut, standing in a bathroom shivering as the mom of the bunch tries to figure out what part of her clothing she can use to dry him off while still maintaining some sense of dignity as she exits the building. He's almost in tears, "Mom! Mom!" until the wet clothes are replaced with dry ones.

We walked out, a sight to see, and raced to the car. We were halfway home. He needs a bath. I left his earplugs in the pool room. He'll lose it if we go back in. It's cold. It's crowded. *Sigh* I guess a stop at the grocery store might be in order. Good thing I have my thick skin on today, seeing as how I have no hairbrush, a wet sweatshirt, and a wild child.

*I recently bought a dvd set of Duck Tales online and we have now watched it 1,532 times.

Sunday, April 5, 2009

well, the part we saw was okay

I've never had an experience where I felt both humbled with newfound compassion and an overwhelming sense of righteous indignation. Until yesterday.

My Aunt and her son were supposed to meet my mom in Chicago to see Mary Poppins on Saturday. But since my cousin is in the hospital (out of ICU, surgery scheduled for Tuesday), she mailed the tickets to my mom and we decided to meet my sister Emily there with Punkin. I have to stop here and ask if any of you know how many semis are on Interstate 80. Punkin does. And he told us EVERY TIME he saw one. "Da ya yis!" (There it is!)

Anyway, we met at Cumberland and took the El into the city. Punkin loved the El and even made a new ... friend?.... during the trip. She was quite possibly homeless, but she gave him four quarters and recited some kind of chant . Very well-intentioned, I'm sure, but we decided to re-gift the quarters nonetheless.

We were a bit confused about where the theater was, so we ended up walking around a bit and then finding a McDonalds to eat lunch. After lunch. we high-tailed it to the theater and made it to our seats just in time.

Punkin was completely enthralled. He sat as still as a statue on my lap and just soaked it all in. BUT, being a four year old with Fragile X, he became excited and agitated at some points in anticipation of what was going to happen next. See, when you've watched Mary Poppins on dvd, oh, 200 times, you start to become familiar with the plot. He started saying, "Coming? Coming?" at the end of the scenes and "Yeah!" when the audience cheered. And being a theater, sound travels fairly well. The family in front of us, including a ten year old boy, was not impressed. He would twist around and loudly "SHHH!!" us every time. Then he would lean over to his mom or sister and TALK to her. OUT LOUD. SHHH yourself, snotty boy.

Anyway, Aunt Emily figured out later that he must have been waiting for the carousel horses to come because the more the show went on, the more he asked, "Coming? Coming!" It was really cute, and he was being really good. He wasn't crying or hitting or even being wiggly. He just wanted those stinkin' horses and they never came.

By the time the kids jumped into the painting, the usher was standing at our row giving me a death glare. A few minutes later, she was back and the man from the family in front of us turned around and was about to say something to me. Before they started their accusations, I just stood up and walked out.

I went in the lobby and feebly tried to tell Punkin that he needed to keep a bubble in his mouth, that he had to be quiet, before we could go back. "Bubble. Ssshh. Quiet. Okay." We tried going back in, but he was so excited to see it again that we never made it past the first row of seats by the door before he yelled out again. The usher, in a rather stern and judgemental voice, informed me that there was a television screen in the lobby.

I started crying. It hit me; we weren't going to be able to go back in until intermission, if at all. And even if we did, there was no guarantee that Punkin would be able to understand that he couldn't talk.

As we approached the tv, I saw that the image was actually just a bunch of colorful blobs singing and dancing -- the camera was zoomed so far out that we couldn't even see what was going on. And every time that Punkin heard a familiar word or song, he looked towards the doors and asked to go back in. He cried, he smacked me, he begged, "Door! Door! Door!" The frustration in his voice just sunk my heart even further in my chest. "We can't, honey. You have to be quiet."

Finally, my ears ringing from his repeated smacks to my face and my eyes blurred with tears, I returned the look of one of the ushers in a group staring at me, "I need somewhere quiet where I can go with him."

'There's a restroom right down the stairs, mam." I don't know how to punctuate this dialouge so that you, the reader, understand that this usher's voice was much like the voice of the woman who walked us out of the theater originally. Think snotty teenager mixed with judgemental overtones and a general, 'Duh, what are you an idiot?' intonation.

Still trying to keep it together, and obviously failing, "I need somewhere where I can sit with him." (Read: I need somewhere where I can go hold him and cry in peace.)

"There's benches by the restroom, MAM."

We made it to the bench by the restroom and an employee gave up her seat on the bench outside the door for me. This was the first and only nice thing any of the employees did for us. Punkin laid upside-down on my lap and I cried.

I was just plain sad. My son was sad.

The music and dialouge were being pumped in throughout the lobby and lower level. So every time he heard them say, "Supercalifragilisticexpealidocious" he sat up, looked around, and asked to go back. "No honey, we can't."

"CAN'T!"

At intermission, I went up and stood by the door to wait for Em and Oma. I saw my sister and lost it -- just bawling. Then she started crying. Then my mom saw us and SHE started crying. We were a royal mess. Meanwhile, Punkin was still politely asking that he be allowed to return to the magical lights, singing, and dancing.

Emily was brave and went and asked a manager if there was any way Punkin could still watch the show. Nope. He's too loud--even in the lobby-- and the actors can hear him on stage. There's nowhere else to sit and there's no sympathy in her voice. To her and her employees, he was a nuisance and naughty child.

But I deal with strangers thinking he's a nuisance and he's naughty all the time, and I know he's not. I hold my head high and ignore them. So why did it hurt so badly yesterday? There are plenty of times when we've had to leave events early or skip them altogether because Punkin can't handle the stimulation or the life skills the event requires. I either adapt or we stay home. So why did I feel so alienated in that lobby?

I really think it's because he wasn't being naughty. He wasn't overstimulated or overtired or oppositional. He DID understand the play and he was clearly enjoying watching it. I have rarely felt so helpless; I couldn't do anything to make it better. He was being punished for being excited!

It's not that I didn't understand the point of view of the theater staff. Honestly, I did understand and I wasn't surprised at all the first time the usher came to stare us into silence. What I didn't understand -- what I was surprised by -- was their rudeness. There was no polite, "I'm sorry, but your son is distracting our actors" or "Some of the other patrons have complained" or even an offer of "How can I help? Can I fetch your purse? Would you like to sit downstairs? You can listen to the play down there while you wait for intermission" as I stood, sobbing in the lobby. It might have been fake, it might have been half-hearted and I probably still would have cried, but I wouldn't have felt as if we had done something wrong.

I have to say that two men (audience members) came up to my mom at different times during intermission and offered their help and well-wishes. One of them must have been sitting near us because he referenced the SSSHHH Family. Complete strangers from the AUDIENCE of the FAMILY PROGRAM taking place at TWO IN THE AFTERNOON on a Saturday were more helpful and friendly than the people GETTING PAID TO BE THERE TO DEAL WITH THE PUBLIC.

As we drowned our sorrows in some Baskin Robbins sundaes (which were seriously lacking in hot fudge), I commented to my sister that people who don't like the public shouldn't work with the public. For example, I despise ranch dressing; therefore, I won't be looking for employment with Hidden Valley. I'm claustrophobic and bad at math; NASA is out of the question. It's like the WIC ladies -- if you don't like poor women and their kids, don't work for a public assistance program!!!!!

But, I digress. The day went fairly smoothly after leaving the show and having comfort food. Punkin doesn't do ice cream, but there was a Dunkin' Donuts in the same place and the lady gave him a six donut holes for free. This helped our moods immensly, and he ate all of them as we walked around the Loop.

Later, we chased pigeons ("Get 'em! Get 'em") by one of the many water fountains, rode a dozen escalators ("WEEE!!!) and ate pizza at Pizanos before our exhausted journey home. It was during the ride home that it occurred to me that perhaps I've been living in a bubble. I've never been barred from participating. I guess I got a small lesson in what it must feel like when people are faced with buildings that aren't accessible to wheelchairs or are otherwise discriminated against. A very brief, mostly painless lesson, but a lesson nonetheless. Newfound compassion.

The indignation? Well, nobody likes it when a stranger makes their kid CRY. Jerks.

Thursday, April 2, 2009

listen for my chuckling in the background

video

things we can't live without



He poops all over the house. Need I explain these two choices?



The Knobby Tube from Super Duper Inc.



Ducky, who is apparently EXTINCT YOU EVIL GUND PEOPLE.


The imposter I ordered tonight.



The only thing that soothes pineapple butt.



Weber Brushes from Super Duper Inc. I love the handles on these.




We both like hanging upside-down on these.

What can't YOU live without?