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.

May catch up!

You want to know what happened to Freddy the speedy snail? I don't think you do... We were out in the yard and Duncan found another Freddy which prompted me to ask what happened to the original Freddy and Duncan said "I squished him!" and I asked how and he said "With my bike tire, I ran him over!" This is normal, this is normal, this is normal. To which Matthew said "You think it's normal until he starts killing puppies!" Ugh, gross. And snails are gross.

And this reminds me of when I had a couple pet slugs, for like a day, in the house. I don't even know if my mom knew about them. I think she did though. What a nice mom for letting me bring them in right? I said no to having a roly-poly as a pet because I don't know what they eat. Oh, and Duncan was on the deck thing in the garage and I saw a smear on the floor and he informed me that it was a bug and he squished it with his fingers. Barf. Better dead than alive though I guess.

Matthew and I did quite a bit of yard work in the last couple of weeks and we have a serious Freddy problem. Massive. We did in the other house a couple of years ago and we got things under control but they just moved down the street apparently and took up residence here. Matthew spread a bit of bait and hopefully they will go away soon. Though the empty shells freak me out too! Gross!

I am sure this yard looked absolutely lovely when they first planted all their plants several years ago but everything was totally overgrown and crowded. The ground cover was all over the place with lots of morning glory and snails living happily ever after. So we cleared a lot of it out. We need space to be able to tell what is a weed and what isn't and the ground cover did not work in our favor so out it came! When in doubt, pull it out! We turned a lot of dirt and now that it's been a few days and rained a bit I can see what kind of plants are still firmly planted and need to be pulled out. Time for a revisit.

Matthew also started with the yard lights and he buried the drain spout down under the sidewalk and out in the yard. He is so handy.

We got our grow boxes built and planted. Matthew built me three, though one is empty because I am not sure what to do with it yet! I think the kids and I will plant radishes and carrots. That could be fun. It's been a bit rainy but we will get them at least planted soon. In addition to that we planted cantelope, cucumbers, snap peas, lots of zucchini, butternut squash and spaghetti squash. We will also be planting strawberries and raspberries when we can figure out where to put them.

This yard has so many gorgeous trees there is no where for a peach tree for me! That makes me sad! I am hoping Matthew can figure something out but it really doesn't look good. Boo. Our neighbors have a lovely peach tree... There is quite a bit of great shade back there though which is nice. Can't complain about that.

Asher full on got his head stuck in the quilt rack. I mean STUCK. I couldn't get it out and I contemplated destroying it. He is the first of my kids to get their noggin stuck though I am not surprised that it was Asher. He is as mischievous as he is snuggleicious. with some pressure and some sadness we worked it out but sheesh! Guess that's what I get for being in the next room, no wonder why I can't keep up on the laundry! I can't leave them alone!

Dylan has been naughty about taking the bows out of her head. To this I say "Nooooo!" They are cute! And I make them! What would I do with all my spare time? Keep up with the blog I suppose? So I have left them out of her hair for a couple of weeks and we tried them again for the last day of school and she kept them in the whole time. Miss Chris and I were super impressed.

The peanut has cute all four teeth on the top. He has that nasty ugly bruise where the other fang was growing in and finally the tooth came poking through. Though not before the middle one on the other side came through so he has two really big teeth on the right side. So funny looking! He started clapping and surprises himself when he makes the clapping noise. It is super cute so I have him clap for me all the time... I don't think he understands what all the excitement is about. He is also scooting along now and getting all over. He was ont he tile and I was on the carpet stretchng for him, trying to make him come to me. Asher got fed up watching him fight for it so he walked righ up behind him and pushing him on the bum toward me, gave him a little boost!

Snuggling in Dylan's bed. I am sure I put Grey in there while I changed her and Ian hopped in for a snuggle.

May never get too big for a sink bath! 

My chaos, aren't they cute? Half in jammies, half not... and Duncan who is both! 

So totally stuck. I don't even know how he did it. Yes, I ran to get the camera and take a bunch of pictures. I am that mom. He even smiled for a couple but was mad by the time I got around to helping him! 

I took the little boys to the park where Asher threw a fit.

Twice.

They had the most fun playing in the sprinkler water though! It was fresh-ish, no diseases I hope!

School Schmool

When people talk about the last day of school they get the sadz talking about how their kids are growing up and "my baby will be in Kindergarten!" and all that but I found it was a little sad for a different reason. I think I will miss the teachers! How hard would it be to be a teacher of these kids for the better part of the year, most days of the week, and then they just take off? Wow... I guess some kids you are probably kind of glad to see go... but then you would lose the good ones too! If it were quieter, I might have gotten a little teary when Miss Chris told me how much she loved Dylan's laugh and how much she would miss her!

Ugh, sad!

Mrs. Davis said she sure loves my kids and I assured her that there were more coming! Alas - it is what it is and I guess this is what we will deal with every year since I remember it last year too. Fortunately Ian will get Ms. Millet and Mrs. Connie next year I think. (Hope!)

I think we got Dylan's school situation figured out after months... they are even registered and ready to go!

We have kind of been in limbo for the longest time because they needed to find the best place for Dylan. Whether it be in her school or another one, she need a little more care than someone who isn't quite as globally delayed as my princess. In the middle of all of it there was some changes in staffing on the district level and we were just hanging out.

The district called me back and they want to put her in the school that we are supposed to go to. The "tier 3" classrooms like they knew them are no more and they will be able to make things work at a regular school in the same classroom as Duncan. She told me that Dylan will have 14 hours of an aide, which, for half day Kindergarten is the whole time. Since this isn't what I had discussed with my inside sources I told them I would get back to them and promptly got on the phone with the ladies to get their opinion. They were pretty darn excited actually! They eased any nervousness I had about the new situation and I went on my way. I think there is a classroom still at another school for kids who are immobile, trached and the like, I think that was still an option if I pushed for it. We have a different situation though with her being a twin and having a slew of other brothers following in tow.

The next day I spoke with Dylan's special needs teacher and I think the new idea makes her really nervous! I got that impression... and it rubbed off on me! So I called the principal of the school... we are tight ya'all, getting that way anyway! ...and she told me that classroom visits as the classrooms are right now won't provide the information I would need since the classroom might look entirely different once they make Dylan accommodations. She seemed confident that they could figure things out. I made plans to meet with the special needs teacher at the pre-school on Tuesday.

When I went to go meet Lori I was ready to let her know that I was most nervous to have her around student who are supposed to be sitting at a desk but man... Lori has a take charge personality if I ever saw one! I mentioned Dylan didn't like sitting down and she said "Well, no Kindergartner does, I hate to break it to you!" Touche... And most of the conversation went much like that. She seemed like she was able to kind of anticipate what Dylan would need and maybe how they might work the classroom to accommodate.

Lori talked about having Dylan in the room with her aide for the first hour of class which is when they do the circle time, singing, playing and that type of stuff. Things she can be involved with. When the kids sit down for activities she would take her out to have a "walk and talk" activity where she would get one on one attention and they can play, walk around the school, she can show Dylan the classrooms and all the other kids. She was excited about providing lots of stimulus for Dylan because you never know what she might respond to.

She asked about Dylan's food and I told her that she might get hungry right at the end of the day and Lori actually offered to give her a small feeding a couple hours after school started to make sure we aren't waiting until the last minute. She was intent to not stress out the pickle and to keep her attention as best as possible while she had her at the school. Great idea, I am not sure why we don't do it now! Ha!

She asked me what my goals were and I was honest with her in saying that we are super easy. I want her to be around the other kids so they can enjoy her and she can enjoy them. I want her to be loved, I want her to be paid attention too, I don't want her to be left alone. Other than that, I am good... she is rewarding to play with and to work with and I hope everyone can see that and enjoy her too. I was assured that whether it be Lori or an aide, someone will be with Dylan at all times. Debi said it will likely be like that ongoing though when she is full time she will likely have a different aide in the afternoon than in the morning.

In talking to Matthew he said that he was hoping she wasn't all talk but let me tell you, she does NOT seem like the type to be all talk! And of course I know that if I am uncomfortable with anything I can always call a meeting to discuss it.

I liked Lori, wow, what a strong personality! Did I mention that? Ha!

And so it's done. They are registered. I talked to the principal again and she was very nice and excited I was going to meet Lori. I gave Lori all the papers needed to finish registration and there we have it. Lori will meet me in the parking lot to pick up the D's at 8:50 every morning and I will have the other kids with me to then go drop Ian off at preschool at 9:00. No more convenient handicap preschool parking and pick up service though with no Dylan with me! The D's school is far away too! They are bussed usually and we drive past three Elementary schools to get to theirs (attendance numbers maybe?) and I will have to be ready a bit earlier!

We have a little bit of school left because Dylan has ESY for the special needs kids and I went ahead and registered Duncan for the Kindergarten prep class to keep up his letter skills. I think we will see his teachers then too and maybe even Shelly for Dylan? We shall see.

Wish me luck this summer, lots of kids, not a lot of outlets!

Dylan is not smiling here but when I peeked around the corner she was giggling and laughing and yelling at Miss Chris. I am sad I didn't get it on camera because she was loving it and it was cute. I think she wanted to make sure people missed her because she didn't sleep at all the last day of school! 

Duncan didn't love these teachers at all did he?