Showing posts with label Respite. Show all posts
Showing posts with label Respite. Show all posts

Sunday, October 31, 2010

Normal Syndrome Redux

I posted this a couple of years ago and something brought it to my mind again today so I figured I'd re-share.

I'll leave my thoughts at the beginning because they're still relevant, minus the "heading to the Buddy Walk" part.

Reading this again makes me a little sad. It's not that I want everyone to be stunned into silence and immediate worry instead of experiencing the more common joy when their child is born. It's that I wish that I, and others like me, didn't have to be.

I really wish that I had been strong enough in that moment to say to myself, "It's going to be ok. These are just statistics. She is our baby and we will love her and, starting in this very moment and until forever, we will enjoy the place she holds in our lives."

It's really hard to do that when people are screaming as if the worst possible thing has happened when you tell them the news. (By the way, it's not.)

Not me. I didn't scream. I was just crying.

I cried for a very long time.

I cried for the mental retardation and the hearing loss and the shortened life span and the cruelty of others and the fear and the heart defects and the short stature and the slurred speech and the teeth that would be delayed and out of order and the spine and bowel and vision issues.

Mind you, those were only possibilities. But they were delivered to and received by me as facts.

And that, to this day, still hurts.

Life is a crap shoot, y'all. You never know how it's going to play out. I'm learning now to wallow in the good times and try to be prepared for the not-so-good without letting that preparation consume me so much that I'm missing out on the aforementioned goodness wallowing.

It's a delicate balance, a hopefully graceful dance.

Thanks for reading, y'all.

=====

We're off to the Buddy Walk shortly and I don't know what kind of day we're in for, so I'm posting something I didn't write. It's not meant to offend, just to help folks who have never had a child with special needs to understand what parents like us go through when their child is diagnosed. It's unfortunate that there's so much sadness, but you really have to fight to remain happy when the news is delivered like this:

Edited because I would be remiss not to add that "typical" or "typically developing" are terms much preferred over "normal"...I didn't want to miss a teachable moment here. Many parents don't like to hear that others don't think their child is "normal" or that something is "wrong" with them.


"I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call...Normal.

Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, buy you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure."

By Anon.

Wednesday, March 4, 2009

For my military peeps...

When we were still living in the DC area after Playette was born (President's Hospital, represent!*), I did a lot of research about available services and programs. It was at that time that I first heard the word "respite." We're fortunate here in CA that we can access great child care via the Regional Centers, but in DC? As great as everything else was? Not so much with the respite.

I read one day that the military was offering up to 40 hours per month, but when I called to follow up, I learned that it was Army and Marine Corps only. It was odd to me that we couldn't join in because usually, especially in DC, what is available to one service is available to all.

I was happy to find out today that the Navy has stepped up their game in this department.

Maybe one day, we'll be able to take advantage of this wonderful benefit. I'm sure it will be especially helpful when BD is deployed in a couple of years.

If you know of anyone eligible, please do share this info with them.


*Something to note:

When I was pregnant, I was really looking forward to getting Playette's newborn photo taken. When we toured the hospital, it was mentioned that we'd have the option of receiving these pictures for free and the novelty of having something different and free than the typical newborn pic, I thought was kinda cool.

But then she was born and Ds entered our lives. I never went to get the photos taken before she was discharged.

It's making me sad just to think about it. I've honestly never revisited this before just now.

Anyway, so because she wasn't gaining weight and I was struggling with breastfeeding my sleepy baby, I made many trips to see the lactation consultant. She was great. Besides giving us as much time and materials as we could ever ask for, she had an adult daughter that had cognitive delays and, as a result, this woman was the most understanding, compassionate person I could have asked for during that time.

One day, while at the hospital for an appointment, I decided that it was time to take the photos. I think Playette was close to two weeks old by then. As you can see, she had on baggy unisex pajamas, not a cute little outfit. I hadn't even started putting bows in her hair yet.

So, anyway, that's the story behind that photo.

We've come such a long way since then.


Friday, January 23, 2009

Catching Up, etc.

I know I've been quiet the last couple of days. Not too, too much going on here. Work is the same (ugh) and I did get more than a little irritated while simply making the appointment for Playette's IFSP (foreshadowing much? - it'll be the first week of March), but really? Nothing too Earth-shattering.

Tonight will be a quiet one. BD made a fire already and he'll settle in to watch BSG while Playette and I...well, don't.

Tomorrow morning, I plan to meet up with our friendly family PT (Playette and I both go to her now) to go "run." I tried to tell her that my body doesn't do that, but apparently she's up for a challenge? I don't know...I think that other people think I must really be exaggerating at my lack of physical ability in that area, but I usually set them straight after about 2.7 seconds. It's horrible. Really, it is. So I told her that I'd meet up with her, if only to set her straight. Plus, you never know. Maybe she is some super run whisperer or something and then I end up wanting to do marathons or something crazy like that. I don't even like to drive 26.2 miles, so yeah. We'll see.

Miss J is coming tomorrow night. We'll probably go to the movies.

On Sunday, maybe we'll finish teaching Playette how to walk. And then go grocery shopping.

...
...
...


For your weekend reading pleasure:

The Girl with Stars in her Eyes - An article about a girl with Ds and her family who live in Denver. What a great place for services, it seems! Can we get a place like that without all the snow, please? Thankyouverymuch.

and

His Best Role Yet - A recent interview with John C. McGinley, an actor best known from Scrubs who has a son, Max, with Ds.

...
...
...

A friend told me yesterday that she saw a family receive a postnatal dx of Ds on one of those reality birthing shows, but she couldn't remember which channel or show. We did some research and it was most likely Birth Day on Discovery Health.

I used to watch those types of shows allll the time before Playette was born, but afterward, I felt cheated somehow. And bitter. Because I never, in all those years of watching, saw a baby with Ds. I used to want so badly to be on A Baby Story one day. I remember being jealous when the aforementioned friend gave birth 8 years ago at a hospital where they were filming Birth Day.

Anyway, so I guess it does happen after all. Or at least it does now. I can't imagine what it's like to catch that all on film. Looking back, I think it might have been great and accurate and realistic if we would have been filmed during the first year of Playette's life. I wouldn't have thought so at the time, but looking back...it would have been real, y'know? It was what it was. I went through all the stages of grief. It wasn't until I started this blog that I feel I reached Acceptance. And some days? I even wonder about that.

Hey, it's a journey.

Back to the show. I check and checked and I don't see it listed to come back on any time soon. When it does show up in the listings though, I'll be sure and post it here in case anyone's interested. If you happen to see it listed before I do, please let me know. The episode is called "Unexpected Outcomes."

There's another show, that I just missed seeing this week, called Deliver Me: Home Edition. In the "Waiting and Wondering" episode, they are supposed to show a family dealing with a prenatal dx.

Interesting stuff, I think. I'm really looking forward to catching these, though I'm sure that the Birth Day episode may be harder to watch than I'm realizing at this moment. I heard it's very raw. Shoot, I was in tears reading Lisa's blog!

I hope the Birth Day family knows that we welcome them into our community with open arms.

Thursday, December 11, 2008

Dilemma

So here's the deal. You know how BD is a student right? Well, the President of the Uiversity is having this soireé on Sunday afternoon and only 10 students are invited. He was chosen. In a perfect world, I would attend as his guest.

I made my hair appointment, made a mental note to buy some stockings, prayed I could still fit the dress I wanted to wear.

But....Ms. J is busy. As it is, she's already coming over tomorrow and Saturday nights. It would be a lot to ask even if she were available. And she isn't. So now what?

We asked friends and co-workers. Everyone has plans. Which is totally understandable 'cause it really is last-minute.

It's times like this that I'm reminded of what I said pre-child:
Parents can't do everything they want to do.
Sometimes you have to say no.
Invitations can be declined.

I'm repeating this to myself over and over like a mantra.

It kinda sucks a little, but seriously? Our obligation to take care of Playette takes priority over all other things. Even really cool networking opportunity-type things that seem like could be possible if only the stars would perfectly align for two or three hours.

Well, this time we just have to suck it up and make a decision. Either BD goes alone or we pass. Or we find a suitable sitter, if that's even possible at this juncture.

This reminds me of something. I know there are folks out there that have been made to feel guilty for wanting to have an adult-only gathering (you should see the wedding forums I've visited in the past - WOOHOO is that ever a heated discussion!). I want you to know that even though I'm a parent now, I'm still with you. The only events Playette will attend are ones to which she is explicitely invited. Taking her with us is not an option here.

By the way, I got mad at BD earlier when he sent me a text message saying that he saw an ad for a babysitter on the bulletin board. I totally thought he was offering to leave my baby with a stranger so that we could attend a cocktail party. As if.

Apparently he was kidding. I didn't know that for a long time so I was mad...well, for a long time.

Oops.

Sorry.[/small voice]




Tuesday, November 25, 2008

Seriously. Is it Friday yet?

Teeny disclaimer: This is from last Friday. I started writing it and then had to stop for some reason that I can't recall. I'm not as irritated as I was then, but the info is still somewhat relevant, so I'm posting it. Let the rant begin.

Today is finally Friday, right? RIGHT?!

You know what keeps coming to mind and making me chuckle every time? Brace yourself: it's not comedian funny, more like "WHA?" funny.

We got this letter in the mail a month or so ago. In it, it tells us how we are now responsible for paying for things that the Regional Center* used to take care of in full. Granted, it's a portion. A percentage. And I still am not completely sure why they do the things they do do, yet lack so much in areas that truly matter like frackin' therapy.

[*CA is broken into 21 regions that each provide services to people with developmental disabilities, some better than others.]

Ahem.

So, you know, I believe in the whole "Don't look a gift horse in the mouth" thing. I've accepted the benefits of things like respite and been happier for it. I mean, do I leave any doubt that I love Ms. J? I've even given California full credit for being good at things which they are good since I am so free to bash the things at which they suck. It's only fair, right?

Ok, so back to the letter. We read it. It said that come time for Playette's next IFSP, we'll be asked for our most recent tax info so that they could assess how much our contribution would be. Well, ok. I guess. I mean, if they gave us what we needed, I wouldn't be so protective of these wants I like so much, but ok. If Playette didn't have an extra chromosome, we wouldn't get anything. Mind you, I'd be 100% ok with that. Plus, I didn't have a differently-abled child for the "bennies." Trust me.

Apparently, this is what they do already with families of older children, but it's a new initiative for those of us with infants (0-3 years of age).

I put it aside and thought nothing else of it.

Until.

I got this weird paper in the mail. It was pink so I knew it was important. It meant that we were receiving some type of service. I look at it and it says "$2100"...$2100 for what?!

Well, apparently, the Regional Center is paying the school district $1050 per month (the paper was for 2 months?) to provide Playette with the federally mandated therapies she needs. Seriously? Again. Some more. Seriously? Trust me when I say that it's horrible. I dread those days that we meet with the Infant Program. I spend most of the time explaining what Playette can do (last time: "Really?! She's crawling? Since when?") and then telling the therapists what I've learned from the internet and other parents.

It's annoying to say the least. Where's the help in that?

You may wonder why we continue. Unfortunately, denying services just isn't an option we're comfortable with long term, so...

So I call the Service Coordinator (which I rarely ever do because it's always painful and never gets me anywhere) about the pink paper and confirm the reason for it since I had never seen one in the entire last year we've been in the program, then decide to ask about the whole "pay a portion" thing. Like, "What does that mean anyway?" You know, just in case we understood it wrong.

We didn't.

And then she proceeds to tell me that we don't have to wait until the next IFSP to start.

OMG, I'm still laughing.

Yeah, we'll get right on that.




Sunday, November 9, 2008

Any Second

That's when Ms. J is due to arrive. Any second.

So I don't have much time. I will give you the play-by-play on my stint at the hospital, but I need more time than I have now. Good thing Tuesday is a holiday. Not only can I provide a decent, respectable post, but I'll also be able to attempt to clean up the mess I made of our office. Everything that was in the closet is all over the floor. Granted, it's well past time we emptied those boxes, but still.

We're headed to Oakland today to watch the Raiders lose. I've never been to NFL game (well, not that I didn't sneak into anyway...this time I'll have one of those actual SEAT things) so I'm excited about that part.

Eek! Time's up!

Sunday, September 21, 2008

Catching Up

On Friday, I attended a workshop led by STOMP. Being a parent of a child with special needs is one thing, but when you throw the military aspect in there, it just becomes a whole 'nother thing altogether. Imagine what it must be like to have a baby, get news that rocks your world, adjust and get settled and then...move across the country.

That's not just my story. There are many others out there just like us. It happened before and it will happen again in two years. Plus, Playette will be 3(!) then and in this world we live in, 3 is a magic age. Everything changes. IFSPs become IEPs. Early Intervention officially ends. (Well, at least I think it does. Please correct me if I'm wrong. I'm kinda living day by day over here.)

So, anyway, two ladies from STOMP came and talked to us about how to work with military insurance and what types of assistance STOMP can offer in general and then they they talked in detail about IEPs, SSI, Medicare, laws, communication, record keeping, etc.

What I thought was cool was that each of those ladies has a daughter with Ds, one 10 years old and the other 20. Not that I wouldn't have listened otherwise - it was just nice. None of the other parents/educators there has a child with Ds.

I had only committed to coming on Friday due to our packed Saturday schedule, but they convinced me to bring Playette to meet them the following morning. I felt so good about that. They genuinely wanted to meet her. There was no doubt in my mind that they had pure, sincere motives in wanting to get to know my baby. They knew, and I knew, that I'd be calling and that over the years we'd probably get to know one another quite well and this was their chance to put a face to a name. So I got up earlier than I needed to on Saturday and sat through just one hour of the all-day seminar.

You know, it's nice to have someone love on your child with no prejudices or reservations. That type of relaxing feeling is just why I wanted to have the Ds'elebration (yeah, the name has really grown on me). I wanted parents to know that no one was looking at their child with anything other than love and acceptance. That they could come and relax and eat and get good info from folks who had been there, done that, and bought the Maroon Spoons.

More on that later.

So, Friday night, we had Ms. J come over so that we could join in on the birthday celebration of one of BD's classmates. I had such a good time. The sushi was fantastic and I think everyone was just being nice to the girl who doesn't get out much because I am so sure that I ate more than my share. I also was reaching my goofy peak, so much so that it would have been better if I had had at least one drink to blame it on. Poor BD.

Example: Lady that sat across from me is preggo with twins. She told me a story about someone being rude to her and that, coupled with Tricia's horrific story from the other day, had me all kinds of fired up. I told my tablemates that it was high time that someone took one for the preggo team and started whooping some ass on their behalf. I claimed that I could quit my job and be a Personal Pregnant Person Protector.

Yup, all off of half of a glass of water.

I graciously bowed out of the bar hopping that followed dinner, stopped at Le Dee-pot to try and find shower cleaning chemicals, and relieved Ms. J a few hours early.

Wait. Can I get a soul clap for BD right quick? He is the man. The man who got up off the couch during college football and took my place in the STOMP seminar so that I could get my hair done in preparation for a pretty big week, work-wise. Big ups, BD, big ups.

He did that right after Playette and I returned from....bump ba da dummm....SWIM LESSONS (yeah! clap clap clap) So. Much. Fun. Playette even went under water 4 times. She looked shocked, but she never cried. SUCCESS!

(Sooo, who's placing bets on how long it takes for the ear infection to show up?)

After all of that, we went to BD's advisor's house for a kick-butt BBQ. So nice. Great people. Beautiful home. Playette really enjoyed the other kids and I...really enjoyed the beans. Plus, they told us that we can come and "visit" them any time we want to partake in the lovely drive their gated community is known for. Bonus!

Today was my first attempt at Ds'elebrating. Not everyone that was invited could make it, but that was ok. There were the 3 of us, plus 5 adults and 7 children. I think the size and make-up of the group was great. I had invited one gentleman that I met at the workshop on Friday. He and his family have only been in town for a week and they got the opportunity to talk to my super-informed mama friend, Girlee (ha! now you get a nickname too ;-) and then I got to play with the kids and sing songs that would be entirely inappropriate if there were no kids around. Score!

Plus, Girlee's oldest daughter? Loves Drop Dead Fred. Too bad it took us so long to find out that factoid. If I wasn't so ancient, we could totally hang out.

I've got a busy day ahead of me tomorrow. First, a personal training session at 0600 and then a full day at work, my only day in for the week. Why? CAUSE I'M HEADED EAST! Reverse Manifest Destiny, baby. My first time on the right coast since we moved. I am giddy with temperature change anxiety. I'll be gone Tuesday-Sunday.

Since it's work and it's so last-minute, I don't know that I'll get to see anyone and that's a shame. I'll try though. I wish I had time to drive to DC. Maybe it's best that I can't. I might go into city shock and then what?

I hate to leave home and am so excited all at the same time.

Sunday, August 31, 2008

Long Weekend

Not much going on here, really, which is a good thing, I happen to think.

Playette's PT has been on vacation (the good one, the real one) so we didn't have an appointment this week. The ST's office is giving us the run-around, so we got a welcome break from them over the past 7 days as well. The other PT came to the daycare on Friday and I chose not to join in as I usually do.

Since I started working outside of the home again, I've been coming into the office late on Thursdays so that I could participate in the PT/OT sessions, but as of the last IFSP review, the therapists are changing their schedules around. I've decided not to beat myself up about not being omnipresent and just go ahead and pick one day a week like I was doing before. I'm choosing the OT, the least objectionable of the two and I think she's choosing Wednesdays, which means that I'll only have two sessions to attend at daycare per month instead of four, as I was doing previously. I'd also like to take Playette to a "Mommy and Me" type group on Wednesday mornings, so this might work out well. I've still got some figuring to do.

The figuring has to do with the work situation that is better (*whew*), but still evolving. I did talk to my boss about what my issues are and she may have actually been listening, but regardless, the support I've received from you good folks and some others has allowed me to take a personal stand and adjust the few things I have complete control over: my attitude, my reactions, and my priorities.

And you know what? I feel better. I still have my résumé out and I'm still scanning the possibilities as they make themselves known (4 referrals to hiring managers in the last week!), but I'll address the options if/when they come. The reality is that I like what I do outside of the sometimes ridiculous conditions and the type of flexibility I have in my current schedule is not something that comes along every day. If I were given a choice between an alternate work schedule that allowed me to come in at noon every Wednesday and $20K more annually? Well, it wouldn't be as easy of a decision as it may sound to some. If I can get those Wednesday mornings with my Littlest where I am? Well, I would be one happy mama.

It's all about balance.

And then there's also that whole thing about the devil you know.

What else...

- BD and I went to the movies on Friday night. After, I had a tasty blue martini. Again, our sitter rocks.

- I went to the library and out to lunch with a friend to a Thai restaurant that I like. Why don't I do that kind of thing more often?

- I started reading one book I checked out [Side Note: How sweet is it that all you have to do is request a book at the library and then 2 weeks later they send you an email saying that they purchased it and have it on hold for you? Is our library special or have I been missing out on this kind of perk forever?!]...

- ...and then made Pumpkin Bran Muffins from a recipe in the second book I got. I'm feeling pretty proud of myself today!

- My last Saturday session of Bootcamp was yesterday. I think I will be in pain until next Saturday. At least. I can barely sit and BD had to carry the Littlest down the stairs for me.

- And speaking of "stairs" check out what my girl discovered was a good peek-a-boo tool:





A broader view of her play area, which I love due to the fact that none of the crap that builds up there is viewable until you're right up on it. Plus, I could think of no better way to make use of that space:



Spying the paparazzi:



Hope you're having a great weekend!

Oh, and could someone find a way to stop me from eating 2 dozen muffins, please? Thanks.

Saturday, August 9, 2008

Date Night

In my 8 months of experience as a (remote part of) California resident, I can say that I'm still not impressed with the services available for Playette and other children that stand to benefit from Early Intervention. As a matter of fact, earlier today, BD looked at a piece of paper I had brought home from Thursday morning's OT session and said, "Oh, that's nice. We've only been doing that for months already." Yeah, we pretty much teach the (free) therapists around these parts. Yes, yes, I know. You get what you pay for.

Funny how in VA, you got a lot more.

Anyway. I didn't start this post to bash CA (grr - maybe another day), but to say that they do have one thing I like. Respite Care. For us that means babysitting. We get a certain number of hours we can use each month to have someone come over and take care of the Littlest One while we either take care of things around the house or do like we're going tonight, go on a date.

This respite thing isn't completely easy though. Of course, you have to find someone you like. If you're a local, you have the option to have the Regional Center pay someone you know, which I think would be great if it were an option for us. But, since it's not, we had the trial and error approach. Luckily, we only had one error. She was a nice enough lady, I guess, but I couldn't get past the feeling that things were "not exactly where I left them" after she had been around. Plus, she didn't provide any feedback on how things had been while we were away - she'd just grab her stuff and high-tail it out the door. I didn't think that was too big of a expectation to want to know how the night went. Hmph. So, yeah, she was not requested again. She did fold baby clothes though. I liked that.[/something nice]

Come to think of it, she was our third pick. The first one was a no-show to our meet-and-greet and the second person quit the agency, I think.

It's all for the best though because now we have Ms. J (no, not that one). I really like her. She might be our age, but I haven't asked. Playette is always clean and fed and happy when we come home and I haven't noticed anything missing yet, not that I expect to. She takes care of our precious cargo and I hope she feels that we treat her accordingly. I'd love for her to stick around as long as we do here.

So, tonight we're traveling um, a little out of our way, to see Batman on IMAX. BD has seen it already, not that that means anything. I have to see it too (I guess). And, apparently, I have to see it BIG. You know, so I don't miss anything. I heard they serve good food at the theater so you know I'll survive.

And, oh yeah, my child eats paper. Like, loves the stuff. Like, I have to pry it from her fingers after she's crossed the room to get to it and then do a mouth sweep while she cries. How it's better than food, I'll never know. Maybe that's how Playette is maintaining her trim physique and I should take notes. Our directions to tonight's destination were her most recent snack.

As a final note, at this morning's strength training session, the Bootcamp instructor suggested to the class that we keep some Advil handy because we may be in that much pain tomorrow. If that sounds like fun to you, let me know...we're allowed to bring guests over the next few weeks.