Love

How did we luck into this boy who brings us so much love?

Harry Potter family Halloween 2013!

Summy lost his first tooth!!

I apologize for not posting this Saturday evening, but Summy lost his first tooth! Dad had to "help" it out as we were worried he would lose it at his football game.

First day of first grade!!!

Summy and Jack had an awesome first day of first grade! They have Ms. Budgell this year. Summy enjoyed moving his name to the "packing" category on the smartboard and seeing Tucker the class turtle, Jack enjoyed getting to play on the big kid playground.

Summy is soarin!

Summy has been working with his OT this summer in the sensory gym on recreating the ride soarin form Epcot. It came time to ride and he tried to make a million excuses...but Jack was by his side. Jack held his hand, talked him through it, and even suggested he sit between us!

When it came time to sit Summy had an anxiety attack but an awesome cast member came over and pumped him u. He ended up riding and I actually cried through the whole thing I was so happy and proud of him!

For every setback, there are days like this to remember and treasure.

Lost tooth!

Today we checked in to Disney. To say the kids were excited was an understatement! They started jumping on the bed yelling "yay" when we got to the room, and one of Jack's teeth fell out!!! (Not the dangling one!) he is so proud and showed everyone! The cast members at the front desk got him a tooth box and one in the gift shop made him a celebration pin. He told me tinker bell was coming tonight with pixie dust so I cannot wait to see what he gets in the morning! At home it is the tooth fairy but at Disney it is tinker bell!

Adventures in a potty

So Sumner has been struggling with certain aspects of potty training. He currently goes to a bowel management clinic, where he has attended for a year, and spent a year with a GI, AND a few years with our pedi getting things straightened out. It is a constant struggle. He doesn't really "get a feeling." He takes medicine to help him...

Today he had to go and Jack went with us to the bathroom for one of the trips. Jack announced in the stall:

"Mom we need to tell those doctors that the Dulcolax and the Mulcolax might be too much for Summy !"

I could not help but giggle. There has to be something funny about spending hours a day in a bathroom.

Lots of thoughts

My day started out with a bang. Sumner had a really tough morning and we had a lot of trouble getting out the door to the kids' swim lessons. They started specialized swim lessons last summer with a man who is FABULOUS with children with special needs.

Everything was going well...well, the lessons are at a country club and I will admit I always feel totally out of place there. And when the lessons were over, the kids wanted to stay and play.

A woman and her children got into the pool and within a few minutes I could tell he didn't like S and J. My feelings were confirmed as she went around the pool complaining about them to EVERY mother. In front of me. It was awful.

The kids weren't being great. Not awful. Not great. I was embarrassed, angry, ashamed, and we left. It shook me. I could hear what she was saying. (Calling my 38 pound Jack "mean boy.")

Yesterday I cried to my OT. Our OT future is slightly up in the air as far as a provider for the fall. She must have been thinking of me though when she shared this blog post. It resonated with me and it made me realize that my children were being kids and I need to accept them for who they are, not always think about how I am going to "help" them. Woman at the country club pool be damned.

http://emmashopebook.com/2013/07/08/early-intervention/

Busy days of summer

Both kids have been doing a ton of therapy this summer, including:

OT

Neuro feedback

Hippo therapy 

Specialized swim lessons

Summy continuing individual therapy.

We found out the boys' stable is closing due to lack of funding. It is hard to imagine not riding as they started at 3 years old and we have really bonded with the volunteers.

Our last riding session is this week. It will be bittersweet for sure.

A year and a half

Today Truey is a year and a half old. Where did my baby go? He wants to do everything his big brothers do! Words he says:

Water

Hi

Bye

Thank you

Jack

Something that sounds like Summy

Dad/daddy

Rarely mama

Kitty

Dump truck

Uh oh 

Down

Taggie

"Bo" and "Lefty"

Doggie

He loves all kinds of trucks and he loves drinking water through a straw or water bottle. He is currently trying to jump and will sometimes count his version of one two three. He is so agreeable. He loves to read books. He pretends to brush hair, talk on the phone, burp, and blow his nose. He is just so great.

Supposed to be in bed...

11:00 pm. They don't even seem tired!

When did this happen?!?

Navigating the world of IEPs

It is hard to know what to do.

It is hard to know exactly what to do with an IEP meeting, nevertheless an IEP itself. It is hard to read about your child...strengths, weaknesses, all of it. Inside that small snapshot are a thousand more things you want to say, a million things more you feel the school needs to know, and even more you want them not to. An IEP meeting is like an awkward middle school dance where everyone is a little sweaty and no one wants to touch. Stairway to Heaven, played for what seems like an eternity.

So, we had our IEP meetings for both boys. They went so fabulously. It wasn't anything I did, specifically, but this time we hired an advocate. For us it was super beneficial because it allowed an outside observer to come in and look at the IEPs with fresh eyes, ask questions that I forgot I had asked, and just look at things from a different perspective. She really helped to organize the meeting by working our way through the IEP. Fixing what needed fixed and clarifying things that we didn't understand. I was very grateful.

To say I was nervous was an understatement. Let's be honest: there is no fun in an IEP meeting, probably from all sides. To say it went well feels like getting a breath when you have been under the water too long. This year has been a tough one for our family as a whole, and for our kids specifically. I was thankful it went so well and we left feeling like everyone there was on the same page.

More later this week about how Jack managed to find himself in the lagoon at Magic Mountain. Never a dull moment, I swear! I have made the decision to pick back up blogging again. I am going to try to do better. I think I owe eleven million pictures of Truman!

Gumigem review

Thank you Gumigem! I was honored when gumigem (www.gumigemusa.com )

asked me to write a review of their awesome teething necklaces, 
bracelets, etc. I had a really hard time choosing, but settled on a
 bracelet which I thought Jack would love.

When they first contacted me, I assumed it was because of 
Truman, but then I started explaining how there is such a need
 for nondescript chewelry in the special needs community. 
Jack especially loves to chew and some of the necklaces are 
so in your face and obviously for chewing.

Jack loves the bracelet although he wishes it was a tad bit thinner.
He says he has to open wide to chew. Next we are thinking of
 ordering him a necklace. They have some awesome ones that
 look like dog tags and might look "cool" at school and not super
 "obvious." All in all I could not more highly recommend a better 
company, with a fabulous product. Please consider trying 
Gumigem for chewellry for your special needs kid!

Thanks Gumigem!

 

What to do?

We are at a crossroads. Things haven't gotten any better with Summy. He is struggling so much and Jack is starting to struggle too. We all are...it is throwing our family into a tailspin.

I feel really blessed that we have so many providers who love and care for our children. Everyone is concerned. In the next week we will have to make some really tough decisions about what path to take with Summy's care. Right now, all I can do is get all the information I can.

Parenting is a tough job. Tougher than really anything I have ever experienced. I definitely have had a difficult history with my family, but having my family has made me really realize that I would do absolutely anything for my children. Seeing them struggle makes my heart hurt. I am their champion, it is my job to stand up and fight for them. Sometimes that job is hard as hell.

Pray for us. Think good thoughts for us. For clarity on how to help Summy, for wisdom on what to do next, for strength to face it all.

Big walking baby

I keep meaning to post: we have a walker! Truman took his first steps around his one year birthday, and started walking across the room the day before he turned 14 months, but he decided finally to make walking his main mode of transportation this weekend.

He is still in that phase of looking like "Frankenstein." It is fabulous.

To Jackson on your sixth birthday

Jack,

Today you are six. I remember your tiny arms and legs waving in your incubator. Today you are all knobby knees and ribs sticking out. You want to be a "cooker" (chef) when you grow up, but most of all you talk about your wife and how you want to adopt kids with her. You are six going in 26.

You love your brother. You love everyone so much and you love to cuddle. "cuzzle snug." You love being around Sumner when when he makes you crazy. You love Truman and especially love comforting him and making him laugh. You are nurturer.

You enjoy school and you enjoy all of your friends. You love to tell stories and you have never met a stranger. You love to eat breakfast for dinner. You love to be tickled. You ask some of the most thoughtful and difficult questions.

You are funny, kind, loving, passionate, entertaining, difficult, sweet little guy.

Happy sixth birthday, sweet boy.

To Sumner on your sixth birthday

Sumner,

Today you are six. You amaze me. You read...so well...and you tell anyone and everyone that you love nonfiction. You want to become a scientist. And a police officer. Actually your plan is to be a scientist on Monday and Wednesday, a police officer Tuesday and Thursday, and take Fridays off.

You love Jack. You sleep like puppies curled up on each other on the top bunk of your bunk bed. You love Truman too, talking to him in a sing-song baby voice and playing peek a boo.

You love our cats. Sometimes I will walk in the room and you are standing they just petting one of them. You love video games and you like to pretend like you are a superhero or you are playing in one. You made me a valentine of us on the game board of Donkey Kong.

You are smart, sweet, take everything literally, love animals, love to pretend to be a superhero, and love the smell of lavender. You have a heart of gold and you are so inquisitive.

Happy sixth birthday my sweet boy. I love you.

broken plate, tough times

It's been a while,

I mean, a long while. I have pictures upon pictures. Pictures that are long overdue. And I am busy, but such is life. Things have been a little hectic around here to say the least. I wish I could share it all, but I am not comfortable doing that here, which makes me kind of sad. I can tell you that things have been rough. For me, for our family. We are muddling through, and I keep telling myself that what doesn't kill me makes me stronger, right?

Tonight is a prime example. I got home from work and picking all the kids up and David didn't make dinner. He got so busy he didn't have time to soak the beans to make bean soup. And I am totally OK with that because we are all exhausted and sometimes just the daily routine of picking up, feeding, homework, cleaning up, packing lunches, checking everything twice on top of daily chores can be very tiring. And draining. And mind numbing.

So we went to Bob Evans. Let me just tell you that the winter is the worst time of the year for us. The kids just flat out struggle. Without the ability to get out and play, to get heavy work, muscle input, and regulation, they struggle. Being cooped up with each other they struggle. Tonight was no different. As soon as we get to the restaurant it is quite obvious that they are not having a good night. I mean crying, whining, bossing around, dropping things, bumping into each other, talking in a loud voice, not a good night.

They were awful to the waitress. I found myself getting so upset with them when I explained to her they have special needs, and that if she could be patient, we weren't going to let them act as they were. I sat with them and made them order as politely as they could, given the circumstances.

They cried some more. We fed them bread. Summy obsessed over it. The food came, there were maybe 5 minutes of peace. They started in again.

And then Sumner accidentally knocked his plate onto the floor, where it broke.

Cue more sobbing. I actually flushed I was so embarrassed. It was a total accident. In those moments I wonder sometimes: am I being too nice? Have I coddled my children? Is this because of me?

I cannot tell you how many times in the last few weeks I have said "What is wrong with you?" to one or both of them. I find myself cringing because I know the answer. I know they try their best to hold it all in during the school day, and I appreciate that. I want them to learn, and I want them to be their best when they are there. I try to remind myself of that when Sumner is sobbing the whole way to school in the car because he is obsessing over the vent in the car. Or when Jack is yelling at me because he is not ready to head out the door again because he missed one of the directions when he couldn't focus on them.

It has been a tough road at our house for these and many other reasons. I know we are on the right path, the road just seems extra bumpy sometimes.

To Truman on your first birthday

Truman,

It is hard to believe that today you are one year old. It seems like just yesterday I was waiting for you, and so excited to meet you. What a wonderful year it has been. We could have never imagined how easy-going and loving you would be!

The last year has brought a lot of changes for you! You were an easy baby: easy to feed, you slept a lot (still do!) and it was rare to hear you cry. From the beginning you won us over with your charm and happy disposition. You have blossomed into a sweet little toddler. You have six teeth! You cruise, crawl, and power around the house almost as quick as your brothers now. Tonight you took 3 steps in a row!

You adore your brothers. You first word might have been "dada," but it was soon followed by "Jack" and "Sum." Now you say "mama," "ba ba," "bye,"and "uh oh" as well. You want to play with and be around your brothers so much. Whatever they tell you to do, you do it unquestioningly. You are pretty sure that you are just as grown up as them, and if not, you sure want to be. However, you don't let them push you around by any means. You hold your own just fine!

You love your taggie and the paci they gave you at the hospital. You love to pet the cats, turn the Christmas tree on and off, and you have a bit of an ornery streak. If we take our eyes off of you for a second and you get the chance, you are up the stairs in a blink of an eye. You are fearless. You are funny. You are sweet.

I couldn't have imagined that I would be so lucky as to get the chance to meet you. You are a joy and my life is better because you are in it.

Daddy and I love you so much! We cannot wait to see what the next year holds for you. Happy first birthday, Truman!