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!

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!

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?

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!

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!

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...

THERE ARE MANY MORE SPECIAL NEEDS CHILDREN THAN JUST AUTISTIC KIDS. SO WHY ARE 90% OF THE ORGANIZATIONS, BUSINESSES, SPECIAL-NEEDS-THINGEES DIRECTED TOWARDS AUTISTIC CHILDREN? WHY IS MENTALLY HANDICAPPED STILL SHROUDED IN SHAME?

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!

"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!