We got a broken arm here...

Good times. Good times.

Sunday Matthew and the kids were wrestling and playing in the living room when Ian fell forward in a very graceful aerobatic maneuver and *snap*. I was on the couch and heard it, but moreover, Matthew's ear was about 6 inches away from it. *shiver* Matthew quickly scooped up Ian to check him out and grabbed his arm and said "It's broken, we have a broken arm here."

"Really?"

Matthew ran to the car with him and went to buckle him in Dylan's seat. Wisely hiding the arm from me!

Mind you, we were due for everyone in Matthew's family to arrive at our house! In fact, walking out I saw Suzie's van... but no Suzie. They were at the front door! Phew. I asked them if we could leave the kids so I could go with Ian too and we were off. As we were pulling out of the driveway I told Matthew I needed my pone but he told me there would be one there. (Hellllo, emergency room... lots of time, needing distractions... not the wisest move...) Dad was just wanting to fix his baby as fast as possible. Ian was soooo sad.

We checked in the ER and got in a room and then I left to run home to get the iPad and the phone. Matthew's family was here, Melissa was waiting for a call to run me said items... Ugh. I run in and Dylan has a messy diaper (second one... I caught one just before...) which ended up being a massive blow out. Melissa gets the Aunt points since she took one for the team and dealt with it. It was not pleasant, it never... ever is with a stinky tubie! Not much smells worse than her messy pants!

When I got back to the hospital Ian was on Morphine. Apparently he asked for me right after I left.


They brought the x-ray machine into the room and the doctor came in shortly after...

Ick! 

They were needing to consult with the Ortho to see if we needed to run up to PCMC to have it set...

When he came back in, the Ortho was on the way to us (yay!) and they gave us all the proper warnings about Ketamine. They were going to give it to Ian while they set it. They said he might moan and groan (he did) and he would be out of it (at one point he was laying there with his eyes open and his tongue hanging out).

When the doctor came in they gave him the meds and went to work. We were warned that things might pop and crackle when he set it *gag* and if we got queasy about it we can wait out of the room. They brought in the C-arm and he pushed and pushed. So. Gross. But no popping (thank goodness) and he called it good. Splinted it and that was that.

Ian started to come around and he said "Hiiiii daaaaaad...." So cute.

At one point he said "Dad, you are so nice. You are so nice because you don't hit me." We were like "WHOA there Ian! Careful what you say around here!" It was so random!

It didn't take long for him to recover all the way and we were off. Straight to get a slurpy. As we got home people were trickling out. It had been about 2 hours and 45 minutes. Not too bad right? The next day he was right as rain! He seems just fine. Cute thing.

We go back to Ortho on Thursday for a cast, he wants a green one.

This is the Morphine fake smiling.

X-ray time

Did I mention how TERRIBLE Matthew feels? I think daddy is more broken than that cute pudgy arm. 

Post setting C arm picture

A little pale. 

That slurpy ended up on my carpet later that night, with whatever else he ate when he got home. Yum.

Don't look at the next picture...

You were warned.... 

Out of the house!

My mom called last Saturday with a brilliant idea of going to the chalk art festival downtown. She really thought we could get all the kids ready to go and down there when it opened (so it wasn't too busy). I wasn't really planning on getting things together that fast... These things take time! Normally when I know we have to be ready in the morning I will get the medicine all drawn up, the kids clothes laid out, all that... I wasn't prepared. But we pulled it all together.

Matthew was MCing a work 5k and he wasn't home but just as we were loading the kids he called and said he was on his way. I don't think he wanted to go too badly so he offered to stay home with Dylan and Greyson. Do I think they missed out? No. It really wasn't their scene and we got to stay longer because we weren't concerned about Dylan being cooped up in a stroller, in the sun (which she hates) and hot. So it worked out well.

I threw in an extra set of clothes so the kids could run through the fountains if they wanted to too! We were set!

When we got to the fountains Bob and Beth were there, fresh off a morning hike, and we were able to divide and conquer with regards to the kids running around in the water. I can see how it would be easy to lose one without that many eyes! Granted if it were just me I would have leashes and made them stay close... this way they were able to have a bit of freedom though and what do you know? Kids like freedom.

Asher was adorable in the fountain, he and Duncan took to them but Ian was more reserved. After we got the biggest snow cone of our lives. So big we could have all shared, but what is the fun in that? Asher was baby birding it the whole time, when I scooped up a bit he gaped his mouth open hoping it was going to come his direction.

While we were sitting and eating there was another mother who plopped down next to the table and proceeded to bolus feed her tubie. I was like "look! Another tubie! I should go say hi!" Until she started yelling at all her kids and just being generally nasty. Poor kids. I think I am a yeller sometimes and then I see something like that and realize that I am still okay. I just felt bad for the older kids, they were like 8 and 10, maybe older... Old enough to not have to sit right next to the mom while waiting for the tubie to get lunch. Ugh, I felt bad for them. Remember this, remember this. When we walked away my mom commented that I handle stressful situations much better than she did! I should hope so!

This week Matthew has been off work and I was spoiled! Ugh, boo to bill paying! He had to go back Thursday and Friday for meetings. Have to keep that job I guess, it's been good to us!

Tuesday he let me sleep in until 10:30! Whoops! Asher came to get him up early in the morning and ended up falling asleep so Matthew rolled him over when he got up and there we were, Asher, Grey and I all passed out for hours. It was great though, I got to tell you... But then I was rushed since I had my hospital meeting and had to leave! Oye! Run!

I love my little peanut but it would be nice if he would sleep through the night... It's hard on me when I am up late! Good thing Matthew helps in the morning so much! (He relocates and crashes on the couch!)

We had a little play date with our neighbor Charlie. He is Ian's age (he will be four this year or is already?) and he is taller than Duncan! He just came right in and went upstairs, in Dylan's room, outside, downstairs over and over checking things out. He got a little more boy than he expected I think!

Grey had his nine month well-child and he is doing just fine, it was uneventful. He is having the heyday that all my kids have right now of being in the 75th percentile for length. It doesn't last long so they better enjoy it, I am sure he will settle in to the 50th by a year. He said that is a pattern typical for kids who have their growth spurt a bit later than than normal (like Matthew did) so maybe they won't be so short. He weighs 18 lbs, height for weight is lower, he is long and thinner.

He also tried dog food this week. Any coincidence that it was the same day he actually started crawling in his hands and knees? Probably... He actually crawls about 25% of the time but he is a fast enough army crawler to meet his needs.

The boring stuff - I bit the bullet and sign up for a half marathon - ANOTHER half marathon. I kind of wanted something to train for in between now and the princess in February, something to keep me pushing and going. I had been eying this downhill canyon run for a couple of weeks. Do I do it? Do I not do it? What do I do? Because it is straight down hill they say to run it with a friend to help you pace yourself so you don't hit it too hard coming out of the gates and crash later. Can I talk someone in to doing it with me?

The other morning I had a bout of insomnia after Grey ate and was up for a couple of hours successfully talking myself into registering. I was just going to go for it and worry about a friend later, if at all. Commit! Well, I should have gotten up and done it because by the time I woke I was back to needing to be talked into it!

Matthew walked up to me staring at the web page for it (again. Still?) and I was talking to him about it and I said "we know I am going to do it right?". At which point he walked over, put his wallet in front of me and said to get it over with! When I told this to April (one of my princess running partners) she said "Dude, in that case #runalltheraces!"

So I did it! It's in September, exactly a 12 week training plan from this Saturday. I can do this! Right?

Downhill is harder on your muscles so I plan to prop up the back of the treadmill and slowly work downhill into my running. I can do this!

Meanwhile I am trying to get to a point where I am comfortable running around 5 miles twice during the week to prepare for a long run on Saturdays. I am not doing so hot at it though! It's the comfortable part that is tricky...

I got a pretty new pair of shoes to try that I am really excited about. Matthew and I both went and got fitted at a running store. I am a late gait overpronater, good to know. No cushy shoes for me!

Saturday Traci and I have a color fun run, our first! It's going to be fun!

This is precisely what I mean when I say he baby birds it.

Most mornings... ahhh, peace. It's brief, but it's there. 

Mom playing with Asher's piggies.

Dylan LOVING her new swing!

Squealing and laughing!

Biggest snow cone... ever.

The zoo and then some

We got a little hook up with Dream Night at the Zoo tickets for last Friday and since that meant it had been a whole year since we had gone to the zoo as a family I was pretty excited to pack everyone up and go. 

It was PERFECT. It wasn't crowded at all, like, not in the least. There is a significant portion of the zoo that is under construction right now so I think they let in fewer people. I know a lot of families that didn't get in but they really could have gotten away with more people I think. It was lovely. But I was sad for those I knew that missed out. 

We have never gone to the bird show so we decided to sit down and watch and wouldn't you know it? I recognized the bird that we had a conversation with along the path last year! And here I thought all along he was neglected... he isn't neglected! (Well, not neglected but not getting as much attention as he needed.) He is one of the stars of the show! Duncan has a thing for birds so I knew he would get a kick out of it and it was pretty neat. They had huge birds that swooped down from the top. They fly right over your head. Pretty fun. 

After that we walked around a little and got some pizza. We dogged out before we went up and around to the big cats though, the kids were tired and it was their bed time. (And I went along with the suggestion on account of wanting to relax before my race day!). 

There is something really fun about seeing that many people with special needs kids all in one place. The kids are just DARLING. It was fun to meet some moms that I only interact with online as well. 

Kiko and Meggie are BACK! Kind of. Let's just say they are closer than they have been and they will be home every other weekend. Every other weekend sucks but they have no income, so as far as saving money goes... every other weekend might have to do. We had them and Shannon and Tracy over on Saturday for fun. 

Matthew built the boys a sand box and I am not sure what I was thinking when I told him they needed one! Yuck! Sand everywhere! They previously had a little patch of sand that was about 18 inches by 3 feet and they had pretty much cleaned all the sand out of it. They loved it. Well, what I failed to realize is that that little patch of sand is by far cleaner than a big box of sad that is inches deep! FAIL.

The men carried the box out back and filled it with sand and all the little people climbed right in. Remember back in the day when you could look at a pile of sand and be like "wow! That looks like fun!" without having to worry about how to get the sand out of crevasses? Me neither. But the kids just went for it. After we stripped them down on the back porch and me, with the thought of bringing them in one at a time, carefully, to the tub for a family kid bath, didn't convey that properly and soon enough I had about four free range naked chickens tracking sand all throughout the house. Oye! 

Soon enough they were in the tub and/or shower and clean and smelling great. They were all in various states of undress all over the living room as we lotioned and dressed. There were so. many. nekked. little. people! It was fun, and crazy, and chaotic, and cute all at the same time. Wow. 

Matthew taught Duncan how to whistle and I might die. It is horrible. I mean, YAY! Whistling! Good job! Now please, just stop. I don't like whistling when it is don't well. It's grating. I am trying to ignore it hoping it wears off but if it doesn't, we might have to send him somewhere outside or behind a closed door! 

My poor little Ian has some kind of flu bug or something. He has been super sick since Sunday night. He was up all night and Matthew was staying up in his bed with him. He can't keep anything down. It's kind of yucky. Thanks goodness he is pretty good at hitting the "sick cup".

My baby boy is 9 months old today. Can you believe it? Sad. 

Nekked! 

Those two top teeth on the left KILL me. They look SO funny. Finally all four are showing and it definitely looks SO much better!

Hi! 

I think the zoo person and us said "two fingers" like 100 million times to Duncan. Maybe 200 million.

On the ride home. He was practically sleeping with his eyes open. Cotton candy on his face, a clump in each hand, ahhhh... this is what heaven must be like.

We had a long drive to get my race packet on Friday so mom came along so I didn't have to tote the children in. We stopped at the park after. Cuteness. 

Mason is a chunnnnnk! So cute. Reunited buddies! 

You lookin' at me?

Oh yea, look at that foot. Good times right there... Good times.

Busted!

First Race Evah!

Well, I did it... I registered for my first Half Marathon, otherwise known as a massive girl's trip! I am running 13 miles to take a vacation. I guess that tells you the value of the trip right? It's in Disney World! I am officially going to Disney World for the first time next February and to get there I am participating in the Glass Slipper Challenge which is a 10k on one day and a half the next. Should be easy right? No? I guess we will see.

This was the commitment that I made to my friends two months ago when I decided that I better start running or else I was going to be in trouble come February. More over, you have to have a 10k under your belt as proof of time to help where they line you up at the gates. I decided to run my 10k the same day my sister in law went for her first half, last Saturday. It's done, whew!

Even though it was about 45 minutes away we didn't drive together because her LAST bus left at 4:30 and my FIRST bus left at 5:45. I am not that good of a friend. I planned to leave my house around 4:50. Grey woke up for his middle of the night feeding at 3:30, which was fine. I fed him, put him down and got ready for my big day.

Before the race I got to chat with a few different gals who were very nice, one was 31 weeks pregnant and another 8. Egads.  They were planning to take it a little easy than me so when it was time to go, it was time and I was off.

After just a short distance the 10k group met up with the half marathoners that were coming down the hill. These were the fastest of them and I was getting passed left and right! Literally. I was being passed the ENTIRE race. I assumed traffic laws, slower people stay right, but no one else did so I more stayed right-ish so they could go around on whichever side was convenient. I passed far few people than passed me that's for sure! I kept looking at my watch to check my pace, I couldn't possibly be going that slow could I? Ugh. My inner dialogue had a lot of "They have been doing this for longer than 4 weeks..." type chit-chat.

At about 2 miles I was pretty sure it would get easier at the half way mark. At about 3.5 miles I remember being pretty unsure of whether I ever wanted to do something like this again. Definitely rethinking my recent Princess registration! About 4 miles I got a knot in my shoulder blade. Ouch! one foot in front of the other.

During the sixth mile I saw the 2:00 pacer for the half and I knew that was Eden's goal time so I just kept watching for her to pass me. Watching, watching. (Mind you, she was also running on a broken-ish toe, so this goal time may have been slightly unreasonable given the circumstances...).

Finally, the finish was in sight. And.... it was far away. Really far. and it just didn't really seem to be getting any closer at all. That was torture. I would almost like to round a corner and have it be there like "Aha! You're done!"  During the last quarter of a mile there were people there cheering and I sprinted to the end. Aaaaand DONE.

I am a runner.

After texting Eden we met up in the crowd of people to get her checked in bag, get our times, and ride the bus back to the cars. She wasn't terribly pleased with her time which was, yea, I will say it... ridiculous! She is too fast for her own good apparently! She did pretty awesome and if I could finish a half in the time she did at some point I would be pleased as punch!

And not that time really matters in the whole scheme of -this is my first race- -I have only been running a couple months- -okay, it was kind of fun-, but I finished in 1:02 which is great! I ran a 10:00 min mile where I expected to come in more around 11, maybe 10:45 with adrenaline on my side. I guess maybe those people passing helped? I ended up with my fastest mile at about 9:51 and my fastest 5k at 30:25. Because we were there and it was fast, we got the official print out of our times and I finished 10th in my division of (kind of) older ladies. I know what you are going to ask... and yes, there were more than 10 of us! There were 37! Holla.

And yes, now that it is a couple days back, I am wondering when I can do it again. Crazy! No! What am I thinking?

The Disney races are more for fun than competition so I don't anticipate being particularly speedy there. There are Disney character photo opportunities along the route, you dress up, you have a great time. But I should at least be able to move my legs in a fashion that will get me across the finish line so I guess I am not done anyway... plus, I kind of like it a little. Don't tell anyone.

Eden and I - Her medal is like... twice as big as mine but she ran twice as long so it's all good. 

Repost "To the me of ten year ago"

Another amazing read - This one reposted from here. Grab the tissues for this one...

To the Me of Ten Years Ago

22MAY

Maura and Mom 2003

You…yes you, holding that sweet baby girl in the plaid dress.  Let’s chat.

You don’t know it yet, but that sweet baby girl has a secret.  One that will slowly and not completely reveal itself over the next few years.

It’s going to break your heart.  Repeatedly.

But I promise you, it will be okay.

No.  Really.

Sure, you’ll need therapy.  And you’ll get a bottle of Prozac with that therapy.  It’ll help.  It will help you crawl out of the big cloud of overwhelmedness you will feel for a year or so. But you won’t need them forever.

That baby girl’s going to keep you up at night – literally and figuratively.  You will worry over her like no other child has made you worry.  I’ll be honest, you’ll never get over that worry, but it won’t haunt you constantly.

One by one, you’re going to give up on the dreams you had for this baby girl.  The ones of her going to school, going to college, what she could be as an adult.  The furthest ones will fade first.  For a while, you live in the moment.  Eventually, you allow yourself to think a couple of years ahead tops.  Oh, you will plan for her long-term, but in the most generic of ways.  Inheritances.  Guardians.  You even ponder the idea of a group home.  But mostly, you don’t think of those things.  You just take it a few days at a time.  It’s just easier that way.

You will meet all sorts of people because of this child, and their true selves will be revealed.  You’ll learn that some people just suck, some people mean well but should keep their mouths shut, some people are kind but sometimes clueless to what you’re going through.  But you’ll learn that most people, at heart, are good.  This child will help restore your faith in mankind again, and again, and again, just in how they treat her.

You will spend the next nine years wondering how you ended up the parent of a special needs child.  You kind of get used to it, but at the same time, you will never get used to it.  It will be this feeling of constant surprise when you sit back and think about it.  How did I get here?  How did this happen?

No, you will never quite get used to it, no matter how much you do accept it.

You will learn to be a fighter.  You will find strength you never realized you had and overcome your fear of confrontation.  You do this because not doing this is not an option.  That baby girl needs you to be this way. And you’re not about to let that girl down.

You will find that those three amazing kids you had before her?  Are even more amazing than you could imagine.  They will show compassion and understanding beyond their years which will make you proud.

But those three will have to put up with so much because of their sister.  Hours in waiting rooms, stuff broken by her, my inability to multi-task and spread my attention to everyone evenly.  Your heart will break for them, that at a young age, they will realize that they will someday inherit this sister.    But once again, these three kids will amaze you, for they will never resent that little sister.  Be annoyed by her?  Oh sure.  But in normal ways.  Those three little children who would hover around Maura’s bassinet and announce every time she cried will continue to look out after her over the coming years.  They will let you know that you’ve done at least one or two things right.

That little baby girl?  Is going to work so very hard the next ten years to learn things.  Slowly, but surely, she will learn things.   I promise you, she will walk, she will get there.  She will talk too – not great, but enough.  Can’t promise you on the toilet training, but don’t give up, she should get there.

You can’t tell right now, but that baby girl’s brain?  Is going to freak out on her.  She will be diagnosed with epilepsy.  It will freak you out at first.  I promise, promise that it will be okay.  It will not stop her from anything.  In fact, you’ll find out that things will improve for her after the diagnosis and starting medication.  It will quickly go from something scary to something to be oddly grateful for.  And then it will just become something that you all will be able to live with.  Yes, that thing that will be on top of your “Big Scary Things I Don’t Want My Child to Have” list will suddenly be not that scary.

I promise that.

Speaking of medical things, your days of never seeing the pediatrician because your kids are so dang healthy?  Those are over.  You will get frequent flyer miles at the doctor’s office.  You will collect cards of all sorts of medical professionals.  You will learn which blood lab does the best blood draws on children.  You will be able to write things like “epicanthal folds” and “oxcarbazepine” without thinking.  You will also know that as much as you’re dealing with, you’re grateful that is all you are dealing with.  Because there could be more, it could be worse.

Your back is going to spasm out from carrying that child around so much. You’ll end up with tennis elbow from lifting her as a seven year old into her car seat.  You will put on weight from stress eating.  You will lose your mind a little.

It’ll be okay.

Your world will revolve around poop.  Your friends may think you talk about it too much.  They will have no idea just how much you could speak of it.  Don’t worry though, you will discover a small group of other moms obsessed over bowel movements.  And you will be able to over-share with them.

Your life is not going to go as you had vaguely planned it.  It’s going to veer off in a new direction.  People will link you to the heartwarming tale “Welcome to Holland”.  You will hate it.  That’s okay.  You’re allowed to hate it.

You will find out that there are cliques even in the special needs community.  So you’ll start your own damn support group.  It’ll be called “Who wants to get coffee with me?”  It will be great.

You will learn to view adults with special needs in a whole new light.  You will see a man in his 50′s happily buying a coloring book and it will make you think of your daughter.  You will not cry in the store, but later on, there will be some tears.

You will feel so very alone with this child at times.  Sometimes, at home, at night, other times, in the middle of a crowd.  You will feel a cold wave of loneliness that you’re certain no one else will ever really understand.

You will feel jealousy, of other people and their children who are developing normally.  Of their seemingly placid lives that don’t involved fighting schools and doctor visits and poop.

Just remember, you were raised to not whine about things and deal.  And you do.  You will suck it up and deal with it as best you can.  And you will do so with a smile on your face.  Because crying is never an option.

Well, most of the time.

You will write and blog about this child, and her life.  And in doing so, find a whole slew of people out there who say “Wow!  I live this too!” and “Thank you for writing exactly how I feel!”  Somehow, you will become a voice for others and you’ll realize that you’re completely inadequate when it comes to saying “thank you” and still are lousy at accepting compliments.  Work on that, okay?

You will discover that while you never expected to be a special needs parent, you will end up a bit of an advocate for special needs children.  You will wonder more than once how you ended up on top of a soapbox.  Don’t worry, you’ll be okay up there.

You will learn that the guy you chose to marry ten years before?  Good choice.  That man will be the one helping you pick up the pieces when you shatter, will love that baby girl as much as any other child, will take care of life when you can’t, and will still find you sexy even after all that stress-eating weight gain.

It’s going to be the proverbial emotional roller coaster, these next ten years.  You’ll have moments where you’re feeling so high, only to crash back down.  But know this -

You will grow.

You will amaze yourself.

You will let go of fears.

You will embrace the now.

And you will love this amazing, beautiful happy child so much, it will hurt.  And you will be okay with that.

Oh, and that straight hair?  Is going to start to curl.  Go figure.

Maura and Mom 2013

Repost "What I want you to know"

There are couple of blog posts that I ran into recently that are worth reprinting and linking here. I loved this one because of the insight it gives about my family and every other special needs family. I think it's valuable to those who just otherwise wouldn't know these details about us and what we are dealing with.

Oftentimes I think friends think it's easy to pick up and leave for the weekend and we have so many considerations. Dylan's need to put everything in her mouth makes hotel rooms, well, kind of scary... *shutter*. And sweaty places like Lake Powell nearly impossible. We don't know how well she can keep her own temperature, a common problem for HPE kids. Last but not least her sleeping arrangements and schedule. some of you might remember us booting Matthew and Dylan to sleeping in  the car one weekend and getting their very own cabin another. (Matthew is the lucky one because he can sleep through anything!)

Another thing I find is that people think I am obsessed with social media... and I am. I know it. I get it. I don't need the comments and you telling me how lame it is and how much over share there is. Some of my best friends are my "imaginary" ones. Many of whom understand me and what I go through far better than my family and friends in person. We have a... thing.

Enough with the commentary... here is the blog which I have reposted in it's entirety from Here.

What I Want You to Know

I'm pretty sure you all have no trouble understanding that being a special needs parent can be tough.  Many of the ways our life is affected are perfectly obvious for all to see.  But I have been realizing that sometimes the biggest issues are the ones no one sees.  Or they see it, but interpret it as something else.  And just don't fully GET it.  And I know that those of you with special needs families in your life really do want to get it.  Those of you who care about a special needs child or their parents and siblings really do want to know how our lives work and how you can best be a part of it.  With that in mind, I polled some of the special needs moms I know and asked them, "What is the one thing you wish you could tell people about your life?"  The answers ranged from a few words to whole paragraphs, so here I will try to paraphrase the ideas as best I can:

1. Being a special needs parent can be very lonely.  As one friend put it: "Even though SN parents are usually surrounded by people - doctors, nurses, teacher's aides, therapists - we live a life of extreme isolation. It is impossible to care for our SN children AND nurture social relationships: belong to clubs, join sports teams, work full time, attend family functions, etc. Many of us have lost marriages, friends, family members due to the amount of attention and energy our children require.  Many of us have lost relationships because of fear, ignorance, or an inability to give as much as these relationships require because of sick kids, illnesses, doctors appointments, therapy, etc."  Seriously, when it comes to the amount of time that goes into maintaining our children's health, WE don't want to deal with it either.  We understand that the people on the periphery of our lives will sometimes make the choice that it is just too exhausting watching us be us.  But that means that at the end of the day, there is often no one left that we can turn to when it gets to be too much for US.  Blessedly, the modern world of virtual connections has brought many of us friends from around the world who are living our lives, but this does not replace a good friend with a cup of coffee and a hug.

2.  It takes us twice as long (or more) to do ordinary things.  Any parent will tell you that dragging the kids along to the grocery store makes the trip take twice as long.  So add in having to get a special needs kid packed and ready to go pick up a gallon of milk.  First, you have to dress the kid appropriately.  If your child is like Anabelle, who cannot control her body temperature, you need to think about the temperature both outside and inside wherever you are going, and plan the appropriate layers.  You also have to wait for the proper timing between feedings, med administration, catheterization schedule and (often med-induced) naps.  I know for ourselves, there is only a brief window twice a day when Anabelle can accompany us on excursions.  You also need to think ahead to where you are going.  Is it wheelchair accessible?  Is there anywhere to change a diaper?  And remember, this isn't necessarily a 10-pound baby you are changing.  You may be travelling with a 4'8", 75 lb 15-year-old who needs diaper changes.  Then you have to pack the supplies.  Traditional diaper bag, plus food and meds if you are going to be gone long.  Many of us also travel with oxygen tanks and suction machines.  Get the kid settled in the car and get the wheelchair secured in the trunk (except the fortunate few who have a wheelchair van).  And while those wheelchairs are technically portable, they are NOT lightweight.  I have friends who have thrown out their backs and given themselves hernias lifting wheelchairs.  Then, once you get where you are going, you need to unload it all and push the wheelchair, plus a shopping cart throughout the store.  Your 10 minute trip to get milk just turned into over an hour.  

My trunk packed for one afternoon at a friend's pool

3. We appreciate offers of help, but please ask us what would be the most helpful form of help.  Whenever I make comments about not being able to do something because I need to be home with Anabelle, I invariably get someone offering to come stay with her.  While I appreciate the thought, that's not going to happen.  You cannot walk in off the street and care for Anabelle, even for 15 minutes.  What would you do if she started having a seizure?  Or stopped breathing?  For a typical kid, you'd call 911.  It doesn't work that way for a special needs kid.  These are regular occurrences that we have to learn to manage at home, or else we would spend our lives in the hospital.  And seriously, if you call 911, they WILL admit her.  No chance of looking her over and sending her home.  I go to every ER visit with a packed overnight bag.  They will ALWAYS want to "observe her" for the night.  So we have learned that 911 or the ER is a LAST RESORT.  I know for ourselves, we won't even leave a licensed nurse alone with Anabelle until she has completed at least a few days of full shifts with her.  Now, in MY life, enough of my friends know Anabelle well enough to know that they could never just stay with her for me, and they often do offer to run whatever errand I need done, but many of my fellow special needs moms mentioned this scenario, so the advice is: don't offer what YOU think we need, ASK us what we REALLY need.

4.  We DO have a choice.  One of the most common things special needs parents hear is, "I don't know how you do it".  And many of us have developed the pat response of: "We do it because there is no other choice."  The brutal truth, though, is that there IS another choice.  During Anabelle's early days, one of the things that came up in conversation with doctors and social workers is that if we did not feel up to the challenge of taking care of her, we could choose to put her in a group home, or terminate our parental rights altogether and hope someone else chose to adopt her.  I have several special needs friends who are parents through adoption, and it is an amazing thing that such selfless people exist in the world  While not taking her home was not an option we, personally, considered for even a second, the truth is that every one of us with a special needs child, whether by birth, foster, or adoption, at some point made the CHOICE to live this life with that child.

5. Please keep inviting us places.  I know that I turned down the invitation to your daughter's birthday party the past two years, but when one didn't arrive this year?  It hurt.  I know you have book club every month and I made it twice last year, but when you asked me to resign to make room for a new member?  It hurt.  Because it is usually not by CHOICE when I am missing these events.  It's because I have no choice.  Because the nurse called out, or my husband is working late or my daughter is in the hospital again.  But please don't give up on me.  Because I have that faint glimmer of hope in the back of my heart that says next time, I WILL make it.  But when the invitations dry up, that hope burns out, and it is a very lonely feeling.  Please have patience, do not feel slighted, and keep reaching out.  There WILL be times when I can reach back

6. Tell us your problems.  No, the fact that you forgot to dress your child in her Eagles jersey for sports day at school does not equal the 35 seconds Anabelle stopped breathing and turned blue.  (And, by the way, both of those scenarios were me.)  But that doesn't mean that I think you should shut up and quit complaining.  I am a typical parent, too.  I was a typical parent first.  I remember when trying to get Elyse to eat anything but chicken nuggets was the MOST STRESSFUL THING EVER!!  And you know what?  Many days it still is.  If I was someone you came to with your problems before, please don't stop because you think I'll think your problems are shallow and insignificant.  "Normal" things still stress me out all the time, too.  I hope I am still the non judgmental listener I have always strived to be.

7. A lot of the time, our typical kids are our greater worry.  It is pretty obvious that our special needs kids give us a lot to worry over.  Those of us who were given "expiration dates" have to try to fight them while at the same time preparing ourselves for their eventuality.  Those of us who have impaired children with typical lifespans have to worry about how to care for them as they get older, how we will continue to lift them as our own bodies start to slow down, who will care for them when we are gone.  All of that is physical, logistical and apparent.  The thing is, though, that for those of us who also have typical kids, it is usually THEIR well-being and future that cause us the greatest heartache.  These are the kids who can see what is going on.  Who will feel the taunts of schoolmates over having a special needs sibling.  Who will miss out on vacations and field trips and dance class because there is neither the time nor the money to provide those things.  Not to mention, who miss out on having your parent be involved in your life.  One of my fellow moms said, "I'll never be homeroom mom."  Well, I actually am homeroom mom for Elyse's kindergarten class, but to be honest, I don't think I would step up for it again.  It was too much responsibility to take on.  We are the family with only one parent in the stands at sporting events, one parent in the stand at the dance recital.  And I know we are blocking your view with our cameras videotaping every detail, but this is the only way the other parent gets to experience this.  Because it is too hot to bring the special needs kid to the ballpark, and the auditorium is not wheelchair accessible.  There are a lot of charities and organizations out there designed to give the special needs child what they need, but the truth is, it is the REST of the family that usually goes without.  Anabelle has never wanted for a thing in her short life.  It is Elyse who never has two parents at her side on outings, or may never get that trip to Disney World she so desperately wants.  My typical child breaks my heart much more frequently than my special needs child.

Also, for many with special needs kids, they have discovered that the condition was caused by a hereditary trait.  To have another child is to risk the same condition occurring again.  For many, it is not a risk they will take.  And the loss of the additional children they planned on having is as painful, if not more so, than what they face with the special needs child.

Elyse after her end-of-the-year gymnastics demonstration.  I went alone because the viewing gallery was on the second floor and there were no elevators, so Daddy had to stay home with Anabelle

8. Communicate.  We have never really faced the problem of people openly staring at Anabelle out in public.  Maybe because we live in a small community and everyone knows her.  But this is a common complaint of other families.  The solution is simple: just talk to us.  I have never heard another special needs parent say that they were offended when someone came up and asked about their child.  But every one of them is offended when you blantently stare, trying to figure out what's "wrong" with that kid.  Just go up and talk to them.  Also, if the person you know has already lost their child, do not avoid talking about that child.  They WANT to talk about him/her.  They WANT you to know their story.  They WANT you to share their memories.  It is not a faux pas to mention the angel baby.  It IS a faux pas to pretend he/she never existed.

One last note on communication: while we truly appreciate you inquiring after our child, we also like to talk about other stuff.  "Normal" stuff.  The same stuff you like to talk about.  Often, when walking around my small town, I get, "Hey, you're Anabelle's mom!"  I am proud to be known as Anabelle's mom, but my name is also Kate, and I was my own person for a long time before my kids came along.  Sometimes, I like to still be that person.

9.  "Life is Good".  The simple answer from a terrific lady I know with a teenage special needs son.  I know our lives look pretty crappy to you all sometimes.  But the real truth is, overall, WE ARE HAPPY.  Our children, both typical and special needs are amazing people, we have one or two or many supportive, caring people around us, we laugh, we make memories and we live the only life any of us are ever going to have.  Sometimes we falter and have a bad day, but overall WE'RE OKAY.  We are all going to make it, and we hope you'll stick around for the ride

School Politics

So I noticed on our friendly social media website that the school district had put up a flyer type sign inviting people to a discussion about changes in the special education program. The notice said the superintendent would be on hand as well as the new staff running the program. I just happened to notice the flyer, and seeing it, thought either Matthew or I should probably go to it. Matthew said he would make it home in time for me to run over.

Wow. This is new territory.

The supintendent started with  power point presentation talking about the budget and all of the problems that they have been facing and how they intend to get things under control. Something about how they are/were at a $400 deficit, they got it to -$275, next year will be -$70 and the following they hope to be at $0.  The reasons for the deficit basically boiled down to:

a) Obamacare - Because of the mandate that they have to provide insurance to any employee over 30 hours they have to cut the Para's to 28 hours or less. This means fewer aides for the special needs kids. Not to mention, because of the fewer hours, potentially less educated paras. Interestingly enough they chose 28 hours to create a cushion just in case something happens and they need to stay over time.

A person in the meeting brought up a specific Para who doesn't need insurance but still got cut and there was a long explanation about how situations change and she would still be entitled to it if she ever need it and in a way, she would still be a risk.

b) No more stimulus. At the beginning of Obama's administration he fed money into the schools as a one time thing. Because the finances aren't ongoing, they worked themselves into a deficit post-stimulus and are now having to reverse the employment changes that they made during that time.

c) Changes in federal money line items. Apparently at some point during the last few years they upped the money given to schools through the general WPU but unfortunately all they did was move it from the social security and special needs bucket. So some gov't hot shots are out there saying they increased funding to schools but sadly, the special needs kids suffer.

At this point the people in attendance basically got all huffy. There was some talk about these problems being ones that every district faces and how others in the area have been doing these types of changes as well. Attendees said that they couldn't care less about the problems the district is facing, they want to know how they are going to solve for them and keep their kids SAFE.

The Super got a little frazzled and tried to hurry and move on the to Sequester slides which was met with a little bit of an uproar. That part and more of the "woe is me, look at my challenges" slides were skipped altogether and they moved to introducing the team.

They are really trying to get the kids to their neighborhood schools and bring the services that they need to them rather than putting them in the "cluster" programs but they do have the clusters available to those that it's applicable to. Clustering was our other option but it wasn't at our neighborhood school.

One mom used an example of how her child was left on a corner and how unacceptable this was an on and on but by the end of the meeting said she was pleased with how the issue was resolved and that everything worked out great. Then why bring it up? I guess that was the pitchfork? Whatever. There was another mom who said she had the same problem in another district and it was all about the recovery.

The meeting lasted a couple of hours! That was unexpected! Kudos to the Super though, in a larger school district, basically any of the others in the area, I doubt there would be this type of town council discussion. He ended it with a commitment to meet like that another time during the school year and again at the end of it so anyone can bring up any concerns that they have.

After it ended I walked up to introduce myself to the woman who I had talked to about Dylan's placement into the neighborhood school. She told me she understood the special education teacher spent a couple hours with Dylan and I (hours? 15 minutes maybe... ??) and that she is excited to have Dylan over there. We spoke briefly but defenses were quite high for sure (not on my part, I am new to this!), especially after I corrected her on the time spent with Dyl, so I just did a quick intro and split. It was late by now!

My take home... I am lucky that Dylan is as broken as she is. We will have less of a struggle to get her services because she needs them. She simply cannot be left alone in a classroom. But, for the kids that can? You bet they will be. It's the more mainstreamed children that are in trouble and their parents have to fight! It's really sad actually because for a lot of those children it's the one on one time that can determine their success.

I am just afraid that at some point when all the boys have started school they won't be able to provide a para for her full time and THEN we will need to change to the cluster. Making all the boys either change schools or not be with Dylan. I might flip my lid.

Something tells me I will have to be highly involved in this school thing for the sake of Dylan and the other special needs kiddos. Like even at the state level. This will be an interesting hobby.