Thief

When your child is diagnosed with epilepsy, the doctors give you a speech.  It usually involves being told that:

1. Your child has epilepsy.
2. We're going to put your child on medication.
3. Most likely, everything will be fine.

Number 3 is a lie.  Rarely is everything "fine."  Most of the time the first medication isn't effective in controlling the seizures.  When you finally find a medication (or mixture of medications) that work, you face the side effects of them.  You start to notice that your child can't do the math homework that just last week she was capable of doing.  Your normally meek and mild-mannered little girl suddenly has fits of temper so violent, you fear for her (and your) safety.  One day walking outside in sweltering heat, you notice your child hasn't so much as broken out in a sweat and is pink with heat.  Upon consulting the medication's list of side effects, you realize your little girl doesn't sweat anymore. 

All of these things you're willing to accept because your child has reached full seizure control, and that is more important than tantrums, cognitive slowing, or lack of perspiring.  After awhile you work around the side effects.

• Cognitive slowing?  She's allowed more time to work out math problems.  You even have her school put it in her IEP.
• Violent fits of temper? Vitamin B-6 (50 mgs twice a day) will offset most of the mood swings. 
• No sweating?  No problem!! You start to carry around a battery-powered fan that sprays water.  Bottled water takes up permanent residence in your purse, and you begin to carry a damp rag when you venture outdoors.

It becomes your normal.  You don't even question it after awhile.  It just is.

Then something happens that makes you realize how much seizure disorders take from your child and your family.  It steals it away from you, and you don't even realize that it's being taken.  From the first seizure on, it steals bits away from your child...memories, parts of her personality, her ability to take care of herself.  The ultimate possibility (and of course, fear) is that it's going to take a life.

Doctors dont explain to you about Sudden Unexpected Death in EPilepsy (SUDEP).  I'm sure that if I went to my daughter's doctor, and asked him outright about it, he'd have a conversation with me about it.  Fortunately, I don't need to.  I know all about it.  I've researched it.  Epilepsy can steal a life at any point.  A person can have controlled seizures for years, and out of the blue have a seizure that ends up killing him/her.  It is my greatest fear as a mother of a child with epilepsy.

Epilepsy steals your peace of mind, your child's health, your child's peace of mind...it is a thief that sneaks up on you, and strikes when you least expect it. 

I belong to a network of mothers that have children with disabilities.  One of the mothers in that network lost her daughter to epilepsy on Saturday.  As much as you tell yourself that her body isn't in pain anymore, and she's in a much better place, as a mother, you can't help but want your daughter with you.  No mother should ever have to face the death of her child.  It's not something you come back from once it has happened.  My thoughts and prayers are with her and her family.

My Motto

You can tell that I'm a history teacher.  This poster was created by the British government in 1939 as a way to boost morale during World War II.  Every time I see it, I think about how appropriate it is for just about everything, so it's become my motto.  You can get through just about anything life throws you just by doing this. 

It's probably cliche, but it's true.  Just sayin'.

Birthday Parties

Liz's birthday parties were a huge success.  Three little girls from her class and two friends of the family came to the first party.  It lasted just over an hour and a half, which by the way is just enough time to get everything done.  Liz handled it like a trooper, and except for a fifteen minute period where she went non-verbal, she did very well.  They played in her room, and I discovered bunk beds are a huge source of excitement to little girls.  Every time I went in there, three of them were on the top bunk.  It was cute.

They made tiaras, which was awesome.  I totally am patting myself on the back for thinking of that.  Target is the source of all cool birthday party things.  We were also going to do manicures, but it didn't work out.  After that, we did the pinata, and had pizza and cake.

Every single little girl got her Zoobles.  Zoobles are Liz's new favorite toy.  She has been lobbying for them every time we enter a store that sells toys.  Yesterday, her dreams were fulfilled.  She was so excited.

The second party was meant for the adults in Lizzie's life that wanted to celebrate with her.  About ten people came, and hung around for about an hour and a half.  That was just enough time, and you could tell Liz really felt comfortable.  I'm so thrilled that so many people love her so much that they wanted to spend her special day with her. :-) 

Next year, only one party.  I AM SO EXHAUSTED TODAY!!!!!!  Liz is still happy, though, which is really all the matters. 

Yay for a great birthday party experience!!! 

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.