Tuesday, December 13, 2011

So stinkin' hard

Here I am having a lovely day, enjoying life and thankful for all the blessings I have. Three days until Christmas Break and kids who are uber excited about Christmas. Finally, Zach gets that Christmas is not about Santa, but about Jesus' birthday. I'm feeling pretty good.

Then wham! A phone call that gets me shaking. Literally. I'm not going to elaborate on that phone call, but it's not a good one. And now I'm faced with something I am ill-prepared to deal with. And I don't know what to do or even what questions to ask. I'm stunned. Then, the realization that I need to talk to Mark about this- and that is going to suck. A lot.

I hurry home only to find out that he isn't here yet because of a super-long meeting at work. So four hours after the initial yucky phone call, I still haven't had a chance to talk to Mark. And this is driving me crazy, but is not the point of this post.

But the bottom line is, I find that I need to forgive two people. The one person who did something much worse is easier to forgive. The person who should be easier to forgive is much harder. Why is that? And why is it so stinkin' hard to forgive? I know it's important, I know why I have to, I just don't know HOW. I pray. I ask God but it seems like there should be more to the process. I don't know... like whack myself on the head with a thick Bible or say a certain prayer. So instead I will focus on scripture that addresses forgiveness.

And I will be thankful that it's not hard for God to forgive me. And that prayers of protection work. And that God made us all different and if everyone were like me, the world would be an even bigger train wreck. I am not sure that I will ever like this second person, but I can't let him take up so much space in my brain. Not forgiving him will not make this person nicer, more loving, or less legalistic. Not forgiving will make me equally bad.

Any hints on how to forgive? Now accepting all suggestions...

Ever feel like this?

I think we all have those moments where we wonder what is going on. I'm just lucky enough to have caught it on film... We all (except Zach) have that "Huh?" look!

Thursday, November 17, 2011

The Littlest Mikarts is SEVEN!

Ryan is seven!!!  It's hard to believe that this little man has made seven laps around the sun!  Sometimes I wonder where time has gone and other days I wonder if he shouldn't be seventeen (you know on those really looooonnnnngggg days!).

Ryan is a spunky little ball of love and wiggles.  He has brought much joy and yes, much frustration (just being honest folks...) Here are seven random things I love about Ryan!

1. Ryan has this smile that is pure mischief.  He loves life and loves to smile and laugh.  Even though he doesn't talk well, he loves to joke around and have fun.
 2. Ryan is a lover!  He loves to give hugs and he is fantastic snuggler (as long as it is on his terms.)  When you pick him up, he just melts into you and puts his head on your shoulder.  It's 100% sweetness.

 3. He has earned the nickname, Mr. Wiggle-bottom.  He has this little duck walk where he sticks his bottom out and then bounces as he walks.  He also loves to jump -especially when you are trying to help him with his shoes and socks.
 4. Ryan is a charmer.  But don't ever tell him he is cute.  That is his invitation to "destroy" you.  When you give him the cute card, he turns into a terrorist. He knows exactly what buttons to push to get his way.
 5. Ryan is a whiz on the computer.  He loves to play games, listen to music and look at pictures (of himself, of course.  He would love to know that I made a whole blog post about him...)
 6. Ryan is tough.  He takes stitches without flinching (of course, removal of said stitches is much more traumatic). Even though he has a high pain threshold and likes to swat at people, he is compassionate. He doesn't like to see Zach cry and is right there giving hugs and kisses.  I hope he does this with his friends too...
7. Ryan is a helper.  He loves to clean up and he is usually the first to start cleaning up his mess.

I have often wondered if we would have had two kids knowing they would both have the funk. I am happy to report that YES we would!  Ryan is a crazy spunk ball who has richly blessed our family.  I love this crazy kid!!

Happy birthday little man!

Thursday, November 3, 2011


On Facebook, people are posting things they are thankful for and a pretty strange one popped in my mind.

I'm thankful for my kids' disability.

Yes, I'm thankful.

It has been a long, difficult journey to get to this place and I know that I won't be in this "place" forever. I'll backslide into the feelings of self-pity and the "it's not fairs".

But right now I'm thankful.

I'm thankful because there are so many things that I won't have to worry about. I don't have to worry about my kids getting picked on at school. I don't have to worry about them getting involved with the wrong crowd. I don't have to worry about them not being "smart enough" or "pretty enough" or "popular enough".

I'm thankful because they have so much joy. My 10 year old has his emotions right on the surface and he cries. He doesn't hold it in and try to be "manly". He cries and I can fix it - or easily distract him!

I'm thankful because they still like "Sprout" and aren't into TV shows that are "too much!" Dora the Explorer is better than some scantily-dressed girl.

I'm thankful because the bus picks them up at our driveway and there will never be a fight at the bus stop. (Ok, never mind, the boys fight with each other, but that's normal, right?)

I'm thankful because my kids aren't into expensive toys or clothing brands. They don't know the difference between a hand-me down and a designer brand.

I'm thankful because I won't have to pay car insurance for teenage boys!

I'm thankful because what the world sees as disabled, God sees as amazing potential. And I know that God will use my boys to do some mighty big things. In fact, I know He made them this way for a purpose that only they can do, with the gifts He gave them. Just like He made you the way you are and me the way I am...

There are so many more reasons I'm thankful for their disabilities. But just know that I'm blessed! I have met some amazing people, seen some amazing kids, and have been part of a supportive community. I've learned so much from my children and the victories we have achieved have been that much sweeter. This is certainly not the version of parenthood I signed up for, I'm thankful that it is the one I have!

Wednesday, October 26, 2011

Hmm... Something to think about

I'm a librarian. Actually, I'm a media specialist, but anyway, I read a lot of books for young adults.

I just finished this great book (Anything but Typical by Nora Raleigh Baskin) about a boy with autism. It is written from his perspective and it lets you see "inside" a child with autism. He and his mom go on a trip and the mom witnesses her son in his first social situation as a tween.

On the plane ride home, the mom says, "I want you to know this trip has been one of the best things I've ever done. All this time, I thought I was supposed to be teaching you. I was wrong. I thought you were supposed to learn how to get along without me. Btu it was me all along. It is me who needs you Jason. You've taught me so much this trip. You've taught me about being brave."

I think all children teach us adults and parents. But I think special needs kids teach us about being brave. It's tough for a neurotypical (that's what Jason calls us "normal" people) to get through this life in relatively one piece. But think how much harder it is if the world isn't set up for the way your brain and body work!

So I'm thankful that my kids are teaching me. They are teaching me to be compassionate. They are teaching me to look at the world from a different perspective. They are teaching me joy. And most importantly, they are teaching me to be brave!"

Monday, October 24, 2011

Not Me! Monday

Remember this? Where you deny what really happened... hoping people believe that you really have your act together! Or if you feel guilty about what's going on in your family... you realize that we all have goofs!

So here goes a Not me! Monday after many, many, many Mondays of not "Not Me"ing.

I'll start out with the biggest thing I need to deny...

I did NOT yell at my kids after they dropped a basket of crayons the minute we needed to leave for church. No, I would never "lose it" over something that can be fixed. And I would never in the middle of my yelling realize how ridiculous I sounded and keep yelling! No, I'm a perfect mom every time!

I did NOT spend an ungodly amount of time cleaning up baby powder. Because I always closely supervise my children, there is no way my little darling son would take it upon himself to apply his own baby powder. And even if he did, it would not be all over the family room or follow him like a cloud.

This will be continued after I think of other fun stuff to deny... Check back later!

Oh - I did not give my kids brooms and have them sweep their toys to the correct location! They were NOT excited to actually clean up!! I did NOT feel like a winner!!

I did NOT almost die after running 12 miles last Friday only to plot my next 12 mile run today. Seriously - those 12 miles felt like a marathon. Or wiat - did NOT feel like a marathon since I'm denying. Nevermind... I'm proud of those 12 miles even if it did hurt!

Sunday, October 23, 2011

Just one of those days

Today is one of those days. The kind where I'm just going through the motions. Nothing is wrong, per say... it's just a blah feeling day. I guess you could say I'm weary.

As we were heading out the door to go to church, the boys dropped an entire basket of crayons on the ground and then just left it there. I am not proud to admit that I got pretty mad. Looking back, I was mad because I felt defeated. I felt like all I ever do is clean up after people. The boys responded to my anger and cleaned up the crayons. I wish I could say they responded to my love, but I didn't exactly exude warm, cozy, motherly feelings.

So we make it to church and the boys were awesome! Today was the first day that Ryan was not a pest during the service. And in the middle of one of the songs, Ryan looked at me, put his arms up and gave me a great big hug. But was that enough to take away my "blah"? Of course not. I would rather wallow in my pity than celebrate the successes.

After church, I begrudgingly grocery shopped (another joy/energy sucking activity).

I am sitting on the lanai, trying to get my groove back. I don't want to just exist. I want to thrive, I want to be full of joy. I'm hoping this blogging will help me get my priorities straight!

Thanks for "listening"... I think it's helping. Well, not to mention the respite care we get this afternoon. But before Ryan's teacher comes over to hang out with kids, guess what I have to do?

CLEAN UP!!! Aaarrrggghh... On second thought, maybe I will do that when I'm in a better frame of mind.

Wednesday, October 5, 2011

Wacky Wednesday (a.k.a. A Day Off With My "Sick" Kid)

We are just going to ignore the fact that his has been a kagillion years since I blogged last.

If you are a working mom, you probably understand the difficult decision as to whether or not your child is too sick for school.  I am never good at this guessing game.  Yesterday, I figured Zach was ok for school.  He had a fever by 3:30pm and was feeling pretty yucky when he got home.

I never gave him any ibuprofen or anything because I was making dinner. After about a half an hour, he was bouncing around and I figured the worst of it was over.  Around 6:15, I gathered the boys to take them to the playground.  Zach insisted he did not want to go and all of a sudden he crumpled up on the couch and stayed there until 8:30 pm.

Yes, the fever was back with a vengeance. I pretty much figured I wouldn't be going to work today...

Now we'll get the actual Wednesday part... I got up early to do my usual Wednesday morning workout.  I checked on Zach, but didn't take his temperature.  He felt a little warm, but not too bad.  I came home from my workout and Ryan was already up (Ugh.  Wacky event #1).  By 7am, I went to check on Z and his fever was somewhere around 101.  I say, somewhere, because I don't think our thermometer is accurate.  I ask Zach how he is feeling and he indicates he wants to stay home.  So, I call in sick.

Not even five minutes later, Zach comes bouncing out of his room.  He has changed clothes and is ready for school.  His eyes don't look too good - kind of that half open glazed look.  The fever appears to be gone and he hadn't coughed.  He pretty much wants to go to school.

Since I'm a teacher, I can't un-call-in because they order a sub for me. So we tell Z that he isn't going to school.  Tears, big, gigantic, meltdown tears.  And from that point on, we noticed he didn't have any coping skills.  I guess that is the "still sick" part of him.

Anyway, I get Ryan ready and while we finish the morning rituals, Zach is just getting so angry with Ryan.  Everything Ryan did made Zach mad.  Finally as Ryan and I go to wait for the bus, Zach says, "Hug?" and gives Ryan a hug and then he literally shoves him out the door.  I hear the click of the lock.

I give Zach his usual seizure meds, but skipped the ADHD meds thinking he would be mellow from his illness.

Wrong.  Very, very wrong.

He was pretty mellow in the morning - he watched cartoons and helped my clean out several drawers.  Then we went to the store.  Spaz.  While at Publix, he was reaching into the bulk candy (yes, with his grubby bare hands).  I pull his arm out and then lead him away - but without touching him.  He says, "Ow!!!" and I reply, "Let me guess, I'm hurting you."  (All the grandparents in the store got a chuckle out of this because they've been there and they are thankful those days are long gone...)

This is getting a bit wordy... So here are the quick wackiness events:
"Washing" my van with the dust mop - that he got wet.
Slithering on the ground like a snake.
Pulling all the kleenex out of the box and making it snow.
Trying to help with laundry by pouring half the bottle of detergent all over the floor.
Yelling at his socks because they are yucky and should go to their room.
Telling a towel that it is hurting him.
Singing to himself, naked, for a VERY long time. (This was after the towel hurt him.)
Wearing his underwear on his head (clean thankfully)
Not being able to go to the bathroom and saying his body is broken and he needs a new one.

And we still have 4 more hours to the day.

I definitely should have sent him to school.

Monday, July 18, 2011

A box...

So has it really been two and a half months since I've blogged? I'd believe it. A lot has happened and before I get to what's really on my mind, I'll share the highlights:
1. Summer Vacation
2. Mission trip to Belle Glade with the most amazing high school kids. Ever.
3. Normal summer routine.
4. Visit from long-time friends.
5. Sunburn
6. Normal summer nothingness
7. Mission trip to San Juan, Dominican Republic with the most amazing high school kids.
8. Upcoming high school reunion.
9. Upcoming return to work two weeks sooner than normal.

Now that the summary is out of the way, I can get to what is on my heart.

Back in April we repeated genetics tests on Zach. We redid a chromosomal microray analysis and the Fragile X screener. I got the results today and guess what? My son is NORMAL. Now, if you know my son or have heard me talk about my son you will know he is as far from normal as they come.

My initial reaction was, of course, tears. I cried. I just want to know what they have. I know I can't fix it and I can't make it better, but I can at least have a group to belong to! So in the middle of my tears, my irrational brain spiraled out of control. Here are a few of my STUPID thoughts...
God can't use us when we don't know what is wrong
Why do I even bother anymore... why should I keep trying to find out
We are destined to be alone forever floating out in no where land
And so on...

I ended up putting my frustration as my Facebook Status, grabbed my Bible, journal and beach chair and headed to the place I go to see clearly. The beach.

I started reading my Bible and asked God to fill me with his truth. Of course, I'm reading through the Bible in a year and right now I'm reading the prophets and it's not exactly the most encouraging reading. Jeremiah is telling Judah that they are about to get God's wrath full-on! So I journaled a bit and processed my thoughts. Then a message came through and it was a FB reply from a friend. She reminded me that I do have a box! Loved and a Child of God. She offered to make a form and check those boxes. I might just make a form and hide it so I run across it every now and again. Here are the boxes I can include:

Child of God (check)
Loved by God and so many others (check)
Created for a purpose (check)
Friend of God (check)

There are a few other boxes to add, but you get the idea! So I was reminded that God uses us, exactly as we are. We don't need to be perfect, have a label, or have a plan. He will reveal to me my next step if I would just be quiet and listen. My first step is to turn to the Voice of Truth and forget about the rest.

Won't you join me on that journey? And remind me when I get to far ahead of myself or doubt that God can use a family with two sons with generic developmental delays?

Saturday, May 7, 2011

It's Days Like These...

It's days like these that make me want to trade my problems for someone else's.

Let me set the stage: I am tired.  I am unmotivated.  A few more annoyances popped up, again.  Zach pooped on the lanai, again.  Ryan desperately wants to wear underwear but can't figure out how to pee in the potty.  And there is drama.  Husband/wife drama and parent/child drama and 9 year old imagined drama.

So as I am cleaning up poop, I get really frustrated and I wish I lived someone else's life.  I'm not sure who I would pick, but surely their problems aren't as bad as mine.

Then more thoughts pop in my head.  Their problems are just as bad as mine, just different.  I've gotten to know enough people to know that no one has the perfect life.  We might not openly share our problems, but we all have them.  And I think about something my friend said, "If we all put our problems in a circle, we would pick our own out again."

So, I would love to trade lives with someone... knowing full well I would want mine back again.  Maybe this time, though, I would appreciate what I have. Because it is the life God gave to me.  And these are the people He picked for me.  And His plan is perfect... even when I forget.

Tuesday, April 19, 2011

My Fifteen Minutes of Fame

This local TV show wanted to do a show on this program, Buddy Break, that we are involved in.  Buddy Break is a chance for parents of special needs children to get a break for 3 hours a month.  The special needs child and their siblings have a one-on-one buddy and the kids set the agenda.  The parents get a break!

So as part of the show, they wanted to spend time with a family that benefits from Buddy Break.  That would be us...  I talked to the producer and she seemed totally cool and encouraging - so I figured... what the heck, I love attention... I love talking about my kids and how God has a super amazing plan for their lives.

I dropped the kids off at Buddy Break last Saturday and wasn't sure if I would be interviewed then or not.  Sure enough, I was.  Now, a normal person would have make up on in case they were interviewed.  Further proof that I am not normal... I was au naturale...  Mark and I then went to a bbq rib fest and chowed down.  God, in His amazing grace, made sure I did not spill any sauce on my shirt because we went directly to pick them up.  I was interviewed again... this time, no make up and sweaty.  That footage will be lovely!

She came to the house tonight to see a typical evening...  Before I describe that, let me just say, the thought of having TV cameras at your house is nerve wracking!  I wanted to redecorate, but never did.  Last night I was in a total state of panic because I have dinged walls and the toys aren't in the right bins.  But then a conversation flashed back to earlier when my friend reminded me that we weren't chosen because we were perfect... we were chosen because we were real.  So I settled for a clean house that has no style.

And of course, the kids were perfect for the camera and now they are a bunch of wild monkeys.

Well, tonight was fun!  Aside from a few, "I hope they edit this" moments.  Here are the highlights that I hope they edit:
1.  Please don't show me looking like Jobba the Hut sitting in a chair waiting for the bus.
2. Please don't judge me for making macaroni and cheese with hot dogs for dinner.  It was 100% beef hot dogs and Kraft brand.  I did add strawberries and green pepper as a side dish.  I wanted easy and something they would actually eat.
3. Mark was talking about the point sheets the kids get at school.  He made it sound like we use the TV as a babysitter and "real" toys like blocks and Legos are punishment!  Ugh.
4. I hope they have a special filter that takes 10 lbs off - well, 50 would be ideal, but I don't want to get carried away.
5. I hope they include the part about God having a special purpose for my kids that couldn't be accomplished if they were "normal".
6. Ryan needs a haircut. I wonder if the filter that takes off my 50 pounds can trim his hair too?

I'm sure I'll add more to the list and I'll let y'all know when the show airs unless I look like the fat cow that I feel like. Or sound stupid. Or am generally mortified by the appearance of my kids or myself. Or... or... or...

Wednesday, April 6, 2011

Just some unrelated stories

Zach is talking up a storm...  He is getting attitude too.  Now, I'm not really complaining about this - but we now need to work on respectful ways to talk to mommy and daddy.

Zach has learned to "Shhhh" only it comes out with just the s sound.  He loves to say, "Sssss, go away, you're mean."

We have a rule that you have to stay sitting at the dinner table or go to your room.  We also send Zach to his room when he is not being pleasant.  Last night, he didn't like what I said to him, so he said, "You need to go to YOUR room." Complete with attitude.

Zach is also obsessed with Disney.  But he actually seems completely overwhelmed by the park and the rides. I think he likes the anticipation better than the actual place.  He even has his bag packed for the next trip.

And finally, Zach has learned "Ta da!" And he knows how to use it!

Ryan, like all youngest children, has learned a few key phrases of his own.  "Mine" in a high pitched screech is always effective.  He has also learned, "Give it back, it's mine!"  But that is not a sentence, it's one word pronounced like this "givbakitmine"

Tonight, I got my haircut and the stylist said, "I like your hair long, you look pretty.  But let me get my glasses so I can confirm."  Gee, thanks?

Trying to figure out the summer vacation and it is driving me batty.  My 20th reunion is this summer and so we might as well make it the vacation.  But really?  A week in Indiana?  No thank you.

Thursday, March 10, 2011

This kid made my day!

Last week, the Challenger Baseball Team travelled to Port Charlotte to play their baseball team. We went last year and I remember it being especially fun. I also remember Ryan tumbling down the bleacher stairs with a piece of pizza in his hand - and he managed to keep his pizza safe.

This year, we got there a bit early and the coach was giving the early bird kids a buddy. To the two girls that he selected for Ryan, the coach said, "Don't tell him he's cute; he'll railroad you!" I laughed that the coach knew this - and knew he needed to warn them!

So after a little bit, I look up and notice that Ryan is no longer with the cute girls. Instead, he is crawling all over this kid. And this kid is having a great time! He spent the entire game catering to Ryan's every whim. He snuggled, he chased, he held, he played. And I had the best time watching.

But that wasn't the best part. The best part was that he intentionally switched buddies and requested Ryan. He was with Ryan last year and really hoped to see him again. I can't quite find the words to explain what it meant to me that someone specifically asked for my kids. I usually spend way to much time worrying that no one wants to hang with my kids - that they aren't someone's "first choice". (Yes, I know how awful that sounds. And yes, I know that it is messed up.) And here is this junior in high school who waited for my Ryan!

And that's not even the end of it. While eating pizza after the game, his friends were sitting on the left side of the bleachers, and this kid (who has a name) sat next to Ryan, helped him with his soda, got him more pizza and just loved on Ryan. Yes, a junior guy, who is popular and macho, stayed with Ryan and helped him. And he acted like it was no big deal.
Even though I told him how amazing I thought he was, he has no idea how much I appreciate him choosing my son! It brings tears to my eyes. I am so impressed with this kid! And he will probably never know the impact of his kindness. Thank you, M!

Monday, February 28, 2011

Will I really miss these things?

I love to tell stories about the "cute" and frustrating things my kids do.  And several friends tell me I should write a book about my life - (yea, I agree... "Really?" is what I have to say to that idea too!) And my friends with older kids tell me that I will miss these days, so every so often, I want to record the things that I will supposedly miss...  This is mainly for my benefit, but you are welcome to read along...

They say I will miss...

Peanut butter smeared on my couches and windows
Being awakened at 5 am on the weekends to a little boys banging in their rooms - building an addition onto their house as Mark says.
Turning shirts around so they are on the right way
Putting seat belts on the kids every time we get in the car
Reminding climbing monkeys to get their feet on the floor and to stop scaling my furniture
Fishing toys out of the pool that were thrown over the baby gate
Hearing Ryan alternate between, "Mama" and "Mine"
Brushing little teeth
Wiping noses.
The goofy grown up teeth that are way to big for their head
The toothless grin that Ryan has
Snuggles when they don't feel well
The way their head fits perfectly on my shoulder when I am carrying them on my hip
Their excitement about getting on the bus and the hugs when they get off the bus
How Zach calls Mark, "Mark"
Eating the apples non-stop

Ok, so a few of these I will miss...  Stay tuned for my next rambling, non-sensical message!

Saturday, February 19, 2011

Why can't it be enough?

I don't really know how to start this post.  I don't exactly know how to say this without sounding bad for a variety of reasons.  So, I'm just going to jump right in...

Last summer one of my work besties lost her son in a horrible motorcycle accident.  I have witnessed first hand how God sustains her.  I have seen Jesus be her only hope and comfort.  I have felt useless as I see her struggle through the pain.

Last week, one of Agape's missionaries in Haiti lost their four year old daughter to cancer. And while I don't know the Whittakers, my heart is breaking.  I can't imagine the pain, but I have better idea because of Patti has shared her struggles with me.

I often feel sorry for myself because I will never be a grandmother, I will never be a mother-in-law.  In a sense, I mourn my boys' futures.

And then, I think about Susanah's parents.  They won't be able to walk her down the aisle or hold her newborn baby.

And this is where I get so mad at myself.  I get to see the joy on Zach and Ryan's face when they are happy.  Or the tears when they are upset.  I get to snuggle with them in the morning.  I get to kiss them good night.  I get to receive hugs when they get on the bus each morning.  I get to put them in time out when they do something they shouldn't.  So while their future isn't what I wanted when I started to dream about being a parent, but they have a future.  They have a Jesus who created them exactly as they are for a purpose only they can fulfill.

Why can't it be enough for me?  Why does it take someone else's pain for me to put my life into perspective?  Why do I continually act like the brat that didn't get her Christmas stocking filled?

How do I make this perspective stick?

Tuesday, February 8, 2011

Wanting a place to "fit in"

I am surrounded by incredible family and amazing friends and people who would do anything for my family.  But I'm lonely. I want a place for my kids to fit in.  I want to have a specific name, explanation, foundation, for the "funk" my kids have.  I am not sure why it's so important to me, it just is.  Oh, I know plenty of people with special needs kids, but they all have a label, an explanation.  Sometimes I just want to talk to a parent who has exactly what my kids have.  Sometimes I want to talk to someone who has both of their kids with the funk.  When I'm feeling all boo-hooey because neither of my kids are "normal", I want to talk to someone who is in the same boat.  And I am not sure why I want that so badly, I just do.  I don't need anyone to fix my kids - I just need someone who gets it because they are right there with me.

So we have been on a 9 year quest to figure out what is up.  It started with Zach when he was six months old and it continued when Ryan was labeled with low muscle tone and 12 months.  We've done tens of thousands of dollars worth of tests (thank you, Blue Cross/Blue Shield and Aetna!!).  We've seen numerous specialists including a metabolic geneticist who conferenced with us and a metabolic neurologist. 

I'm beyond the point of fixing my kids; I've moved on to helping them fit into this world and be boys filled with joy.  But I'm still willing to pursue the name of their funk.

Last April we did some pretty cool x-linked mental retardation tests.  We had to go to great lengths to get the blood drawn and sent to a lab in South Carolina.  I even had the perfect excuse when I mess up... I'm half-retarded.  I found out today that they came back normal.  Yep, once again, my kids are declared "normal".  If you know my kids - you would find that as funny as I do.

We also did a second chromosomal microarray analysis.  I haven't heard the results because the pediatrician didn't send them to the geneticist.  But I expect them to be normal as well.

Anyway, today we visited our geneticist and she examined the boys and shared her thoughts.  Basically, there is so many new syndromes being introduced on a monthly basis.  New DNA tests are being created monthly and old tests are becoming more effective.  She told me that two months after our last microarray analysis, they updated it!  (It is kind of neat to see these evolve - we did the very first type four years ago.)

She pretty much ruled out x-linked syndromes and is now refocusing on autosomal recessive syndromes.  (If you remember your Punnett Squares from high school biology you will remember that in order to have the recessive trait, both parents have to contribute the recessive trait.)  I am not sure of specific syndrome names, but she did mention retesting for Fragile X.  She said the boys have the hallmark traits even though the previous tests showed they didn't have it.  Apparently, they greatly improved the test and she thinks it's worth a try.

Later in the day - after a side trip to Ikea - we visited the neurologist.  We have seen Dr. Fernandez several times a year for the last 9 years - I have such respect for his determination to figure out these kids!  After telling him about the genetics visit, he said, "You will find out what is wrong with these boys."  He has never said that before and it gets me excited...  Scientists are learning so much everyday and it's only a matter of time before we can put our finger on it.

So now I will  be cautiously optimistic about this round of tests.  I've been optimistic before and was let down - I tend to lean on the pessimistic side, but today's appointments give me a good feeling!

Tuesday, January 18, 2011

A cute little funny...

If you are eating... come back later!

Zach still has BM accidents - or on purposes - and he gets a shower when he has poop in his pants.  Since this is quite frequent, he associates showers with poop in the pants.

A few weeks ago I came home from my morning run and Zach was up too early.  Our conversation went like this:

Me: Hey - you're up early, I need to take a shower, can you stay in room for a little bit?

Zach: Momma!  Poopy in the potty! You went poopy!

Very clever...  And he's making connections and transferring his knowledge.  Not bad for 6:30 in the morning!

Friday, January 7, 2011

I'm gonna say it and be hated

This thought has been bubbling in my mind for a little while now, and it just needs to ooze out of my mouth. So, I'm going to say it and then explain why...


Ok. I feel better.

Please understand, I am not saying that autism isn't important or a concern for parents. I know it is. But I get so tired of trying to find things for my mentally handicapped children and all I can find are things designed for autism. Or books about autism. Or websites about autism. Or resources for autism.

I get that autism research is relatively new and we are learning so much about it. I also understand that there are so many children labeled with autism. I get that big money is being directed towards autism. I get it.

But what about kids with plain-old low IQ? What about kids with plain-old gross motor and fine motor issues? What about plain-old kids with speech problems.

Maybe I'm jealous that there isn't much help for me. Maybe I'm jealous because insurance won't pay for extra therapies like they would if I had autism. Maybe I'm jealous because there aren't support groups for me. Or respite care. Or money poured into how to teach my kids better.

Don't get me wrong. I'm not saying autism is easy, I just wish there was more for my kids.

So the second part of my rant is the whole shame surrounding mental handicapped people. Maybe shame isn't the right word... but it seems so much harder to deal with/accept/know how to interact with people who have a low IQ. It's not contagious.

And one more thing while I'm at... where is the support group for people like me... my kids have no diagnosis just lots of pieces of a puzzle. Come to think of it... we probably all want a support group designed exactly for our personal needs! I guess we call that family!

Sunday, January 2, 2011

"Out of My Mind" by Sharon Draper

I'm reading this great book written from Melody's perspective. She is a 5th grader with Cerebral Palsy and can't talk. She communicates by pointing to words and letters on her board, but it is pretty limited. Melody is actually brilliant and has a photographic memory, but no one really knows this - but Melody.

I love this book and it makes me think about the kids I know who are locked inside their worlds. My kids too - even though they have different disabilities than Melody.

So Melody is being mainstreamed and made a friend, Rose. She invited Rose to go to an aquarium with her family and a neighbor, Mrs V. Mrs V is a big woman who is one of Melody's biggest supporters. In Melody's inclusion classes, there are these two girls who are just mean. The tease Melody and her classmates.

On the trip to the aquarium, the group runs into these mean girls. They corner Rose and ask why she is there with Melody. Rose is uncomfortable and didn't give a specific answer. Mrs V gets involved and what she says is brilliant and I want to remember it forever.

Page 120:
Mrs V, however, isn't going to let anybody stop her. From her almost-six-foot height, she towers over Molly and Claire. "You! Girl with braces on her teeth!" Claire looks up at her, stunned.

"Yes, ma'am?" Claire has enough sense to say.

"Why do you think your parents spent good money on getting you braces?"

"Huh?" Claire looks confused. Molly has quietly disappeared into her Scout troop.

"Your teeth were imperfect, so your parents got you braces. One day you'll thank them when you get a date for the prom," Mrs V roars. The whole Scout troop, plus a few other visitors to the aquarium, stop to listen to her.

"What do my teeth have to do with anything?" Claire asks, looking around nervously.

"Some people get braces on their teeth. Some get braces on their legs. For others, braces won't work, so they need wheelchairs and walkers and such. You're a lucky girl that you only had messed-up teeth. Remember that."

See! I love that!!!! I want to remember that when someone makes fun of my kids or their friends! Brilliant... Hopefully that gives you something to think about - it sure did for me. In fact, I got out of bed, turned the computer on and shared it with you!

Happy New Year, by the way!