Liz's Birthday

Today, my very awesome kiddo turns eight years old.  Normally the day would have started with much celebration, and a rousing rendition of "Happy Birthday To You," but not today.  No, today started with me dragging her out of bed by her feet, which is actually normal.  Then she got dressed, and I pinned her "Birthday Girl" ribbon to her chest.  Again, she was fine.  The big problem came when I went to brush her hair and teeth.  Sensory issues overload.  I had to hold that child down to do both.  There was much screaming and fightingand kicking and scratching.  After nearly half an hour, I managed to get her ready for school.  Ten minutes after that, she was fine.

Her sensory issues are just getting worse, and I honestly don't know that her behavior therapy is helping with that.  I'm just at a loss there.  I know so much of it is not her fault, but in the same respect, she can't keep going on like this. 

This weekend is her birthday party.  I've sent out two rounds of invitations in the hopes that someone will RSVP.  So far, no one has.  I'm really hoping that people just aren't calling, and they'll show up.  On the upside, after the little girl party, there's going to be a separate party for all the adults in her life that want to celebrate with her.  I KNOW that one will be a success. :-)

Have a great day, everyone.

Birthday Parties...Who Do We Invite?

I mentioned in my last post that Liz will have a birthday at the end of this month.  Naturally, I am planning her birthday party.  We're going to do a Fancy Nancy theme.  Very posh.  I'm excited for it, and I know Liz is super excited for it.

The thing is, she's terrified of birthday parties.  Actually, let me clarify that statement.  She's terrified of the number of kids at parties, and especially the singing of "Happy Birthday To You!!"  Her senses get overloaded, and inevitably, there's a meltdown.  And don't even get me started on what happens when we're in a restaurant, and someone there has a birthday.  If we're lucky, we get fair warning, and we excuse ourselves.  If we aren't...well, she becomes nonverbal for awhile, and we end up leaving the restaurant sooner than we planned.  One night, there was an astounding FOUR birthdays, and I thought we were going to have to sedate her. 

Anyway, most of our last behavior therapy appointment was spent discussing how best to get her through this event.  She definitely wants to have a party, so not having one isn't an option.  After forty-five minutes, we came up with a plan:

1. We won't invite more than five to seven young ladies.
2. We won't sing.  At all. 
3. We have an escape plan if she becomes overwhelmed, and shows signs of having a melt down.
4. We have a schedule that we inform her of, and go over with her repeatedly before the party.
5. We emphasize the FUN.
6. We make her involved in every single aspect of the planning of the party.

Friday night, we went to Target, and picked up the invitations, and she picked out a tiara making kit that we can do at her party.  I have such high hopes for this little event.  Say a special little prayer for us, will you?

On Being a Parent and Venting

At the end of this month, Liz will be turning eight years old.  I adore my child with every inch of my being.  She is the most precious gift that I have ever been given.  What I am about to write doesn't change ANY of that, okay?

Being a parent is hard.  Being the parent of a special needs child is extremely hard.  Parents of children that don't have special needs can freely vent about the stress of being a parent, and NO ONE thinks anything of it.  However, the second you add in a child with special needs, that's taken away from us.  Somehow venting about the stress of doctors' appointments, schools, etc. makes us "bad parents" to some people.  We aren't bad parents.  We're ordinary people with extraordinary worries.  For some of us, our lives are punctuated by doctor appointments and therapy visits for our children.  Mix that with stresses about our childrens' schools and learning problems.  We're a stressed out group of people.

We deserve to be able to take some time for ourselves.  We deserve to be able to say, "Wow!!  My family is driving me crazy today!!" and not have people look at us and judge us as bad parents.  We're not complaining about our KIDS; we're complaining about our STRESS!!

And just because we're parents of special needs children does not mean that we aren't human.  We are going to get frustrated, and angry.  We're going to need people to listen to us, and not judge us for that.  It doesn't mean we don't love our kids.  It doesn't mean we hate our lives.  I love my family.  I love my life.  At one point a few years ago when things were terrible with Liz's health and school for her really stunk, I was bemoaning the situation, and just really feeling sorry for myself.  My sister asked me, "If you could go back and make Liz healthy, would you?  Would you change anything, Marisa?"  My answer was, "Absolutely not.  She is perfect the way that she is."  Sometimes, though, the stress kicks my butt, and I need someone to listen to me.

That Time I Felt Like a Bonehead.

You know, I always think of things I should write about on my way to work.  I have a half hour commute to the school where I teach, and as I make that drive every morning and afternoon, my mind wanders.  Inevitably, I end up thinking about Liz, and our lives as they are now.  At some point, I have a thought, and I think to myself, "I should write about that for my blog."  Then I get to school or get home, and I get busy with my responsibilities.  I usually end up forgetting my brilliant thought until the next commute, and then the cycle starts all over again.

This morning I did think of something, and instead of forgetting about it, I remembered to post it to the blog.  WOO HOO!!

So, I was going over Liz's neuropsychological evaluation from three years ago.  (Please keep in mind that three years ago, I was NOT the advocate that I am now.  I was a young mother facing issues with her small child, and I had no idea which end was up.  I could handle her seizures with no problem, but as I was facing her developmental issues and what they meant, I was lost.)  Anyway, I was reading her evaluation, and I got to a place that referenced her having Pervasive Developmental Disorder-Not Otherwise Specified.  I have a clear memory of reading that, and thinking, "I need to look that up."  Right after we got the evaluation back, Liz was placed in the hospital, and I completely forgot to do my research.  Last summer, I picked up a book on children with austistic spectrum disorders, and there was a very specific chapter on Pervasive Developmental Disorder.  Basically, Liz is autistic.

I felt like a bonehead.  I mean, really...a great big ol' bonehead.  I talked to my sister and The Husband, and both told me that I shouldn't beat myself up because I was so very overwhelmed.  Yeah, that's true, but the mom in me is just a little bit angry with herself for not researching it sooner.

Now, what does this fact change? 

Honestly?  Absolutely nothing.  I wouldn't change how we raise her at home.  I wouldn't change her IEP at school.  There's not a special "austic doctor" that she could go see.  Nothing has changed.  Period.  We're all just a little more aware now, and while that's great, again...doesn't really change a lot.

 

Absolutely NOTHING to Report

There's been a complete and utter lack of posting lately, and the reason behind that is everything has been calm around my house.  It's such a nice change from the norm.

I will share a bit of good news, though.  Liz won the citizenship award for her class for the last six weeks of school.  She brought home a lawn sign, which we're now proudly displaying.  VERY proud of her. :)

We have behavior therapy tomorrow.  I'm sure we'll be discussing Liz's anxiety from me leaving on the student council trip, and how well she handled that.  I was very proud of how she managed her separation anxiety, and how far she has come since then.  She is really turning in to a very grown up little girl.  :)

Home Again, Home Again...Tra, La, La, La,

I am so overwhelmingly happy to be home.  The Husband and Liz picked me up this afternoon after several hours on a yellow bus.  I hadn't seen them since about 6:15 Sunday morning, and let me tell ya...that was TOO LONG!!  I missed my sweet girl and The Husband.

Let me just say that I am exhausted, but it is that sweet, happy exhausted.  I spent the last 3 days with 4,500 high school students.  Sometimes I was annoyed, and sometimes I was tired and short tempered.  When it came down to it, I enjoyed the heck out of my time at the state convention, and honestly, I would do it again next week.  I work with a really great group of kids.  Teenagers get such a bad rap, but honestly, they're some of the coolest people on the planet.

Sadly, our sister school lost their bid for the vice president's position for the State of Texas.  I know they were bummed because they worked REALLY hard, but I also know that they learned from their experience.  They'll approach it next time, and I have every confidence that they'll win it. 

Like I said yesterday, I still consider it a win.  They educated 4,500 teenagers and a couple hundred adults about epilepsy.  That is an accomplishment.  One of their sweet students looked at me as he was getting off the bus, and said, "Thanks for letting us use epilepsy."  I said, "Thank YOU for wanting to do it."  They were awesome.

So, where do we go from here?  Well, I'll keep writing this blog, and doing my part for advocacy.  I'm pondering what we'll do for advocacy next year for epilepsy awareness.  The potential is there, and it will be awesome.

I'm saying awesome a lot tonight.  Awesome.

What a Great Day

Our sister school did an amazing job with their campaign skit this morning. It was emotional, and informative. Sitting in the audience, you could tell that people were affected by the story told by the video. Tears were flowing all around me, and some of them weren't even from me!!

We won't know the election results until tomorrow morning, but even if they lose, they can be proud of the fact that today they educated 4,500 students about epilepsy awareness. That, in and of itself,is a huge win. I am so proud of them, and what they've accomplished today!!

Tomorrow is a Very Big Day

For the next few days, I'm at the student council state convention in Arlington, Texas. My school's sister school is running for the state vice president position on an epilepsy awareness platform. I was interviewed by their student council a few weeks ago for a video that will be used during their skit tomorrow. Guys, I am so excited. At the very least, tomorrow a couple of thousand kids will be educated about epilepsy awareness. If they win...it gets bigger than that. I've got chills just thinking about it. The possibilities...so excited.