Being Thankful

I am the first to admit why I haven't written in over a month.  I've been lazy.  Completely and utterly lazy. 

Since this is the month when most people go on an on about who and what they're thankful for, I've decided to do the same thing.  Having Nate in my life has changed me in so many different ways.  I am more thankful for the little things each day.  The big things are still super important, but every tiny breakthrough with Nate is something to be thankful for.

These are, in no particular order some important people I am thankful for.

MATT-
      Without him, there would be no Nathan.  Without my rock, I would probably be in some type of asylum right now.  He balances me out, he is strong when I am weak, patient when I am ready to snap.  Matt is calm when I'm freaking out and gives me all the breaks I need from the kids.  He's a wonderful husband and father, and without him I wouldn't be who I am today. 

MY PARENTS and MY IN LAWS-
      Both my parents and Matt's parents are amazing.  They try their best to understand what we are going through and really are hands on when it comes to helping out with Nathan. My mom and dad have been our saviors when it comes to baby-sitters.  We definitely need time to relax and chill away from Nathan, and my parents are always there to watch him when help is needed.  Matt's parents are so great with him as well.  John is always up for taking him for walks and distracting him, while Linda finds awesome things that keep him occupied instead of destroying things!

MY BROTHER, MATT'S BROTHER & BOTH OF MY SISTERS IN-LAW-
      These 4 people have definitely done their homework.  They are always asking for information about Nate, wanting to know what's going on with him and how they can help.  They have been some of our biggest cheerleaders and have really reached out to us in times of need.  They're always looking for that special gift, toy, object that will grab Nate's attention and project him into that next phase of learning.  Steve & Charity's kids have gotten to know Nate, and accept him for who he is, regardless of his quirks.  I know that when the time comes, any future nieces or nephews on my side of the family will do the same.  I am confident that both families will raise their children to be caring and compassionate, and love Nate.

THE KANENGEISER FAMILY-
      My best friend in the entire world is Amie.  Amie and her family have been the friends who have been there for us through thick and thin.  They have been a part of Nathan's life since is birth, and I can't ask for more caring, loving friends in my life.  Amie is always so positive about Nate's future, and I often turn to her for pep talks and to boost my spirits when I'm feeling down.  Their son, Jackson is about 18 months younger than Nate, and is so accepting of Nate's speech issues.  Although Nate can't talk to Jackson, they find a way to have fun, understand each other, and create quite a commotion.  

SURRARRER-
      Nate's school is Surrarrer Elementary, and I am so thankful that out of all of the schools in the district, he is at Surrarrer.  It is such an amazing place, and he really feels at home there.  I have gotten to know the staff and principal, and am confident that he is really getting a great education at his school.  I was so nervous about him switching schools last year because Surrarrer is so much larger than his previous school, but I now realize that I have nothing to worry about.  Nathan is taken care of, and is accomplishing so much thanks to his wonderful teachers.

MR. E.-
      Seriously the one person I trust the most at Surrarrer with Nate.  Alan was Nate's aide during his kindergarten day/extended day, and is with him again this year.  Nathan absolutely loves him and all I have to do is mention his name at home and Nate shapes right up (Alan- Can he come live with you??).  Mr. E. has done so much for Nate- from making his sight words into an awesome Curious George file folder, to being his friend, to showing him the ropes at a school he used to be so unfamiliar with.  It's been great to get to know Alan as a friend, and I'll be really sad the day he decides to leave Surrarrer and move onto his own classroom.

NATE'S MATES-
      Our team for the CASANA Apraxia Walk.  Everyone who has joined our team either by donating, walking, running, or anything else.  I appreciate you.  I appreciate that you want to be there and support my child.  I appreciate that you are willing to take time out of your busy lives to participate in a 1 mile walk or a 5K.  I appreciate the cards, phone calls, emails, and everything else that has gotten me through these past few years.

NATHAN-
     Most of all I am thankful for my wonderful son, Nathan.  He's definitely challenging.  He drives me insane to the point where I don't think I'll make it through the day, but he is my son and I love him.  Nate has taught me so much over the past 7 years, and I am so happy that he is in my life.  I am thankful that he has his health.  I vent about his disability, but I know it could be worse for us.  Nathan, I love you with all my heart.

I'm sure that there are people that I have left off my list and believe me, it's not intentional.  My friends and family have been such a great support system for me.  I am thankful for each and every one of you.

His happy place

A few years ago, we decided to begin Therapeutic Riding with Nathan.  Therapeutic Riding, is a program developed for children and adults with special needs.  The program is designed to help improve a variety of skills such as core strengthening, communication, building trust, improving motor and social skills, and decreasing sensory overload.

When Nathan started his Therapeutic Riding Program at Rocky River Stables, he instantly fell in love with horses and horseback riding.  He would "ask" when it was time for riding and both Matt and I knew it was something he looked forward to on a weekly basis.

During his 45 minute riding session, the instructors work on both gross and fine motor skills while on the horse.  The riders perform activities like arm and leg circles, puzzles, putting rings onto cones, and controlling the horse.  They do many of these activities inside the riding ring, and also go out on trail rides if the weather permits.

Nathan has come so far in the past 2 1/2 years of riding.  He always did a great job with the puzzles (he's always been interested in puzzles), but struggled with other things.  When he first started, he needed help getting on the horse.  Nate wasn't able to do the arm, wrist or leg circles without help from his side walker.  He also didn't always want to hold onto the reigns of the horse.

Last night, I stood in the entrance of the ring/riding arena, and watched Nate in awe.  He quietly and calmly walked over to his horse, and got on with minimal assistance.  He grabbed the reigns and was ready to go.  During the short exercise part of the program, he did the arm and leg circles with a small amount of prompting.  Nathan looks and acts so comfortable on the horse, and is truly at a happy place when he's up there.

I am so glad that we have been given the opportunity to participate in Therapeutic Riding.  We have found an activity that he absolutely adores.  I hope that being up on a horse will always be one of his happy places.

For more information on Therapeutic Riding at Rocky River Stables please visit
http://www.valleyriding.org/therapeuticriding.html

Nate's Mates

Most of our team- minus Nate since we couldn't get him to stand still!

I am completely overwhelmed.  I'm overwhelmed by all of the love and support I felt on Sunday at the CASANA walk for Nathan and children with Apraxia. It took everything I had to not burst into tears multiple times during the course of the day.

I'm sure most of you who follow my blog (or are friends with me on Facebook) know that Sunday was the Apraxia walk/5K at Osborne Park in Huron.  This is the second year that we participated in the 5K/Walk for Apraxia.  Last year, we decided to keep it small since Nathan had just received his diagnosis, but this year we decided to go all out and make it huge.  And HUGE it was!  We had 61 people officially registered on our team for Nate's Mates.  Due to some extenuating circumstances a few people weren't able to make it to the actual race (that's OK!), and I believe we had about 55 people there to support Nathan.  Our team, Nate's Mates raised $3,075 for CASANA.

The generosity that people showed during my fundraising efforts was unbelievable.  Donations to CASANA and Nate's Mates came from people I see on a daily basis, people I haven't seen in years,  people I have met only once in my life, and people I've never met at all.  Matt and I appreciate every one's willingness to support a cause that is so near and dear to our hearts.

The day of the walk/5K was so moving.  There were about 250 people there to support loved ones who are battling Apraxia.  Our team of 50-some people was a huge presence at the park.  It is so obvious that people care about and love Nathan and our family, and I am so thankful for all the love and support that my friends and family have given us over the past 7 years.



Here are some pictures taken at the event :

Nathan- all for you buddy :-)

Sara, (Uncle) Nick, (Aunt) Kristen, & Nate

The Kanengeiser Family

Proud parents

Nate's biggest fans

Nate's favorite teachers- Mr. Frederick (and his girls) & Mr. E

Grandpa, Oma, Karen, & Doug

Denise and Evan

Some of our team members

Peppers for lunch

I have to share this because its too funny not to. 

This afternoon, right around lunchtime, I received a text from Nate's aide at school.  Here's how our conversation went:


A:      Did you pack Nate an entire green pepper?

ME:    WHAT?!?!?!
         OMG, he was messing with his lunch- I bet he put it in there
         You can send that back home

A:      Lol, I figured

So, apparently when Nate was pushing me out of the kitchen and living room, he was smuggling a green pepper into his lunch bag.  

A green pepper???  My kid is so strange.  Most kids would try to sneak in a pack of M&Ms, some cookies, or fruit snacks. Mine chooses a green pepper.  

I seriously can't stop laughing.

A letter to my son

Dear Nathan,

I wanted to thank you so much for dumping out the entire contents of your brothers 10oz sippy cup onto your comforter. Not only am I happy that you wasted milk, I am super excited to wash your sheets (again) since it seeped all the way through the comforter onto them. 

I'm also really excited that you did this today because I haven't cleaned up enough of your mess. I thoroughly enjoyed wiping up 1/2 of my can of Diet Coke from the table in the basement. I cleaned it once today, but you're right, it definitely needed to be cleaned again.

I absolutely loved stepping in your spit after coming down from your top bunk.  My foot was in dire need of some moisture, and what better way to provide this than your spit.  I hope that next time I'm coming down from changing your sheets I can step in your spit again.  

I really hope that we can have another liquid filled day in the near future, I seriously can't get enough of it.

Love,
Mom

Storytime? More like "borey-time"

From the day we brought Nathan home from the hospital he has been read to.  As a former teacher, and having a mother-in-law who is a retired children's librarian, I totally know the importance of reading to your child.  

Nathan has been read to every day of his life.  When he was still napping, we would read him books before naps, before bedtime, and various times throughout the day.  As a 7 year-old, he still gets books read to him before he goes to bed at night.  I strongly believe that Nate's love for books stems from us reading to him so much. 

Because Matt and I want to instill the importance of reading in both of our children, we (obviously) read to Evan as well.  For the past few months, we have been having "family time" before we put the boys to bed.  We gather on Nate's top bunk and read plenty of books to the boys.  Evan usually bring 2-3 of his toddler appropriate books, and we grab a longer book for Nathan.

Lately, I have been paying close attention to Nate while it's Evan's turn to have his books read.  I wish I knew what he was thinking.  He stares off into the distance and looks completely bored out of his mind.  Why wouldn't he be bored?  He's been hearing these same stories for the past 7 years!  The one book that he's been completely interested in is his reading books from school!  He absolutely loves paging through it and "reading" all of the stories to himself.

He used to engage in his books "asking" questions, counting things, and paying attention.  For the past few months, it's been quite the opposite.  I wish I could ask him how he feels about Evan taking over and choosing what books get read and in what order.  I'm sure that it takes a lot of patience and strength to deal with a sibling, who is typical, when you struggle so much to get even the simplest words out of your mouth.  

Seeing Nathan like this breaks my heart.  His face is usually so animated and alive, but when it's time to read with Evan, his expression totally changes.  I am trying to remedy this, When we are done with our "family time" one of us takes Evan and puts him to bed, while the other reads Nate a longer book that is more appropriate for his age level.  Right now we're reading some "Nate the Great" books, which he really seems to enjoy!

I would do anything to get into Nate's mind and know what he's thinking.  I'd love to know exactly what he likes/dislikes, his dreams, and his daily thoughts.  I'd love to know these things but until he's able to verbally express them, I'll be kept in the dark.  I think that's one of the hardest things about having a child with a disability like Nate's.  

Running

I've been asked a few times this past month "Why have you been running so much lately?"  Those people apparently don't know that for the past 11 weeks I've been training for a half marathon.  

Training for the half has been an amazing experience.  I have pushed myself to limits I never thought possible and have run distances that I never imagined.  Yes, I am running the half for myself, but I'm also running it for Nathan.

I don't know what the future will hold for Nate.  I don't know if he will have to live with us for the rest of his life.  I would hope that as he grows and matures, he gains a sense of responsibility and can move out on his own.  I don't know for sure if this will be possible.  If he does happen to be able to move out on his own, I'm turning off all the water in his place before he moves in :-)

I'm running for Nate because I know that I need to live and stay healthy for him as long as I can.  I'm still young and in good health, and I believe that running, exercising, and taking care of myself will lengthen my life and allow me to help out Nathan for even longer.

I  worry that something will happen to Matt and myself, leaving Nate and Evan alone.  I worry that when Evan is an adult he won't want to help Nate (if help is needed).  Running gives me a sense of hope that I will continue to stay healthy and that I can be there to help out Nathan (and Evan as well) for as long as possible.

When I run, I'm able to sort through so many thoughts.  I love to run with a buddy, but running alone helps me clear out all the things that are going on in my mind.  I can de-stress, have an hour to myself, and just clear my mind.  I truly believe that this makes me a better mom.  I can take a break from my kids and when I come back to them I'm a better person.  I'm healthier, calmer, and think (at least for a little while) that I have some answers.

So, when you ask why I run, my answer will be short and simple.  I run for Nate.

Soap Monster

Many of you may already know about Nate's obsession with anything water. This infatuation has been going on for a few years now, and it's resulted in some pretty hefty water bills.

Well it turns out that this past weekend has resulted in a brand new, and just as messy obsession. Soap. Yes, soap. Hand soap to be precise. Who on earth becomes infatuated with soap?? Oh yeah, that's right, my son.

I have absolutely no clue how or why this started, all I know is that its annoying and totally messy.

Nate's a pretty smart kid when it comes to causing trouble. It's almost like he gets a master plan in his head when he wakes up and works through the day to carry it out. He starts by doing something that he knows we will say no to like playing in the sink, dumping out the cat food, or spitting on stuff in the house. As we are cleaning up his first mess, he moves on to something else.  Right now it's the soap. I've found puddles of it in the bathroom, on the kitchen counter, behind the bar in the basement, all over the bathroom rug, and on the living room floor.

The newest location (which he came up with while I was cleaning up all the wine glasses he took off of the shelves in the bar) is his bedroom. I walked up the stairs to see the typical 'I swallowed a canary' look on his face. I instantly knew that he did something and he was proud enough of his mess to show me.

I walked into his room to find a trail of liquid hand soap all over the floor. It was like friggin Hansel and Gretel but instead of bread crumbs, it was Method soap. I had no idea where to even begin, because cleaning up spilled soap is no easy task. Let's just say it took 5 bath towels, a wet hand towel, and my Swiffer Wet-Jet to get everything back to normal.

Nate's room now smells like cucumber melon and his floor is cleaner than its been in weeks.  Not only do we have all the water off (except in the kitchen and the upstairs bathroom), there is no soap left out on the counters.  It's all hidden, and it's a pain in the ass.

It's come to this...

My monster has made such a mess out of my house, that we've resorted to making his room look like this:

Just kidding :-)

In June we decided to take apart Nate's full sized bed and put bunk beds in his room.  He loves being up high, and we thought that a little change in his room might be fun for him.  When my brother was a kid, my dad built these amazing bunk beds for him.  Fortunately, they were still sitting in my parents' basement and were still in great shape.  Matt and I went out, got Nate 2 mattresses, and up went the bunks! 

Nate was really excited about them, and being up so high in is room.  He loves looking out the window and sleeping on the top bunk.  Evan also loves hanging out on the top bunk.  For the first few weeks, they would spend time up there with books and toys and I was actually able to get some things done around the house!

Here's what Nate's room looks like with his new bunks

A HUGE thank you to my dad for building such great beds for my brother, to Nick for letting us put his beds in Nate's room, and to my mom who had the brilliant idea to put the bunks in Nate's room :-)

Birthday Presents

For Nate's 7th birthday we took him on a train ride through the Cuyahoga Valley.  We sprung for the first class Emerson Car which has a glass domed ceiling.  What an amazing ride for Nate's birthday!  The entire trip was about 3 hours, and he sat for almost the entire thing.  We brought snacks, books and the iPad to keep him occupied, and it turned out that we didn't need most of the stuff we brought.  He wanted some juice and snacks, but for the most part he sat and looked out the window the entire ride.  Matt and I couldn't believe how GOOD he was.  We actually felt like a "normal" family doing a "normal" thing.  Thanks Nate for surprising us with your good behavior :-)

Outside of the train

Looking up the stairs to the Emerson domed car

SOOOO happy!

Nate had such a great birthday this year.  He not only went on an amazing train ride through the valley, he got a trampoline!  Now, if you know Nate, you know that a trampoline is the PERFECT gift for him.  He bounces off the walls on a regular basis, and now he can jump to his heart's content anytime he wants.  The first time he saw the trampoline, his face lit up and he started giggling with excitement.  He immediately asked (in his own words) if he could go on.  He jumped and jumped and jumped some more.  We have had so much fun on the trampoline this summer. 

First Grade!

So, I'm sorry there were no blog posts or updates the summer (like I promised).  By the end of each night, I was completely and utterly exhausted.  We had such a busy summer and Nate was out of control for most of it.  I'll be sure to post some pictures and updates from Nate's summer soon!

Today was the first day of school.  I have been looking forward to this day since the last day of kindergarten.  No joke.  For the past week, we've been talking to Nate about going back to school and everyone that he is going to see.  When we mentioned names like Mr. Frederick, and Mr. E, he always smiled and looked super excited.  He loves those guys so much, and they treat him so well.  Last year I couldn't have asked for better people in his academic life, especially since it was his first year at a new school. 

Things have changed a bit for the current school year, and I would be lying if I said I was happy about it.  On Thursday the 16th, I got a bomb dropped on me.  I was taken by such surprise, that I didn't even know what to say.  At our beginning of the year PTA meeting, I was talking to Nate's principal.  He mentioned that there was a new intervention specialist hired into the building, and that Nate would be working with her instead of Mr. Frederick.  How I felt--shocked, confused, disappointed, depressed, irritated.  I went home to tell Matt the news, and we were both dumbfounded.  Last year, Nate advanced so much, why would they want to change that dynamic?  I'm sure that the new teacher is awesome and a great person, I'm just so confused as to why there was a change. It just makes me really sad since Nate thinks so highly of Mr. Frederick.  I guess we'll just have to see what the year brings...

Anyways- Nate was super ridiculously excited to go back to school.  This morning he got up at 7:45 and wolfed down his breakfast.  He was waiting in the bathroom for me to brush his teeth and fix his hair.  As soon as his shoes were on, he grabbed his backpack and paced around the house waiting for me to give the OK to go out to the bus stop.  I'm so glad that he loves school so much.

We went to open house this evening, and being in a first grade classroom made me so nervous for Nate.  He's sooooo different from other kids, and sooner than later, they are going to start realizing his differences.  I hope that they're accepting of him and don't make fun of the fact that he doesn't talk and has a harder time with things than typical kids.  

Nate had an awesome year in kindergarten, and I really hope that this year goes just as smoothly and he has just as many academic accomplishments. 

Lucky # 7? Let's hope so

I can't believe that it's been one month since my last blog post.  I've literally spent every waking hour putting lamps back on tables and pictures back on shelves.  I've pulled countless items out of the toilet (and so have the plumbers) and tried my best not to absolutely lose my mind.  Summer vacation is a hit or miss in our house.  I'm glad that Nate has some time off from school to relax and be a kid, but the time off totally screws with him and he becomes an anxious mess because he doesn't know what to do with himself.  This results in a stressed out mom who can't even take a shower without wondering what's going to be broken when she's done.

So much has happened this past month (both good and bad).  I'll work on some updates soon!

Today seems like an appropriate day to post about Nate.  It's his 7th birthday.  How the heck am I old enough to have a 7 year old!?!?  I remember the day he was born and the months that followed.  I was completely blissed out, I was proud of my little family, and I was naive.  I had no idea that our lives with go down this type of path.  Although I still continue to go through the stages of grief, I have somewhat learned to accept the fact that I have a child who will most likely need special attention/services/therapies, etc for the rest of his life.  This is something I did not sign up for, but know I have to accept.  I still continue to get jealous of all my friends with typical children (yes, I know I have 1 typical child - shut up) and I still get angry about my situation.  I still get depressed when thinking about Nate's future, and still cry when I think about the fact that my child had a difficult time answering a simple yes or no question.  I still sometimes slip back into denial and think that he will eventually be "normal", and I still get very very very (extremely pissed off don't talk to me) angry.  Those feelings are all normal, and if I have learned to accept them as the stages of grief.  I am extremely thankful for my biggest monster.  He has taught me so much about life, patience, and acceptance.  He has brought an immense amount of joy to my life.

So, Nate's birthday is today.  We are taking him on a train ride on the Cuyahoga Valley Scenic Railroad.  He absolutely loves trains, and has never been on one.  Matt thought it would be a great idea to give him a train ride for his birthday.  I really hope that he does well on the 3 hour train ride (update to follow!).

Thank you to all of you who have supported us through these past 7 years.  Thank you to all of you who have donated to Nate's Mates (http://www.apraxia-kids.org/faf/home/default.asp?ievent=1012293) and thank you to all of you who continue to be our friends even though I push you away at my worst times.  I love you all!

Let's hope that year 7 goes better than the rest.

Happy Birthday Nathan, I love you with all my heart!!!

Kindergarten is over

Well, Nate is officially a 1st grader!  Today was his last day of Kindergarten.  I can't believe that this school year has gone so fast.  It seems like just yesterday that it was his first day of school.  Matt and I were able to take the bus to school with him for orientation.  Nate was so crazy, running up and down the driveway while waiting for the bus to come.  I thought to myself "there is no way he is ever going to stay in one place and wait for the bus to come."  Matt and I were totally freaking out because he wasn't in preschool anymore.

Nate has come so far in 180 school days.  He has gone form running around the neighborhood while waiting for the bus, to either sitting or standing at the end of the driveway waiting in anticipation for the bus to arrive.  He absolutely loves school, and would walk around the house in the morning wearing his backpack as soon as he finished breakfast. 

Nate took the first 2 weeks to explore the entire school building, keeping his teachers on their toes while racing from his classroom to other rooms in the building.  They didn't know where he would end up once he took off.  Now he navigates the school with ease.  His teachers know that if it's time to go to art, gym, or speech, Nate will take off and wait at the door for everyone else to join him.

He is spelling, he recognizes words, does homework, has learned his math facts, and is using an amazing program on the iPad to communicate with his teachers.  He's settled down in the classroom.  At the beginning of the year he spent about 1/2 hour in the mainstream classroom with his peers.  By the end of the year he was in the room for the entire kindergarten day.   I'm so proud of all of his accomplishments and so excited that he kicked butt in mastering his IEP goals.

This past school year has been good for me.  I've learned to let go (a little) of my biggest monster.  I had such a hard time with him going to kindergarten.  Nate was going from a school of about 65 students, a school where he spent 3 years, a school where everyone knew him; to a school where everything was the complete opposite.  Surrarrer is not a school of 65 students, it is a K-6 building with hundreds of students.  He was entering his first year at a "huge" school and I was stressed.  No one at Surrarrer knew him, his quirks, his need to explore, or his issues.  I tried to prepare myself and his teachers as best as I could, but knew that there was only so much that I could do.  I had to let go, and I did.  Nate thrived. 

My baby is a first grader now, and I am one proud mommy.

 

How Can I Help?

In the past many wonderful people have asked me "how can I help?"  I don't have much of an answer when that question is posed.  My dream answer would consist of several things:

"You can help my child speak"

"You can pay for his speech therapy"

"You can come over a few times a week help me out by watching my boys so that I can have 10 minutes of peace and quiet"

I know that these aren't feasible responses, so here's what I'm answering now.

Each year CASANA (Childhood Apraxia of Speech Association of North America) has walks and 5Ks to raise money for research, grants, programs, webinars, and other incidentals that help out families who have children with Apraxia.  

My family and a few close friends participated in the walk/5K last year, and I would love to have a bigger and better team this year.  The walk is on Sunday, September 30 in Huron.  It's a very uplifting and inspiring walk/run.  I have met so many families who have shared the challenges and successes of having a child with Apraxia.  

What I'm asking of all of you wonderful and caring people that I know is to come and participate in the walk/run on September 30.  Join our team- Nate's Mates, and show your support for Nate and all of the other children with Childhood Apraxia of Speech.

If you aren't able to participate, and would like to make a donation, that would also be very much appreciated.  The link to the walk/run website is

http://www.apraxia-kids.org/faf/home/default.asp?ievent=1012293

Our team name is Nate's Mates.  When you join our team you'll not only get the satisfaction of helping children to find their voices, but you'll also get an adorable Nate's Mates t-shirt to wear during the walk.

Thank you so much for your love and support. 

Track Star

Today Nate participated in his school's field day.  At the end of each school year, the kids gather outside and participate in track and field type activities.  Each child has an opportunity to participate both individually and with his/her class.  

Nate was able to run in the 25 yard dash with his classmates, as well as participate in both the softball and frisbee throwing contest.  

When Nate came home from school today, the first thing I saw was a beautiful blue ribbon pinned to his t-shirt.  Since Nate isn't able to answer my "WOW, what did you take first place in?" question, I emailed his intervention teacher.  I was told by his teacher that he wasn't 100% sure which event he got the ribbon in, but he did a FANTASTIC job at field day.  

I'm doing a little more investigating right now and I'll post and update when I find out what event you'll see him in at the 2024 Olympic Games.

I'm so proud of my biggest monster and his FIRST PLACE RIBBON!!!

A Bit of Normalcy

I've always wondered when there would be a time where we could do things that "normal families" do.  Go to dinner, have picnics in the park, take both kids to the grocery store, not completely stress out when going over other peoples' houses, take the family to a movie, etc., these just don't happen in my house.

This weekend, I finally got my taste of normalcy.  In April, we met 2 couples through some friends of ours.  One of the couples invited us to their Memorial Day party.  We warned them about Nate and how crazy he is, but they assured us that he would be completely fine at their house.  They have a fully fenced in backyard, plenty to do, and if he ended up inside their house everything would be fine.  Now, after 6 1/2 years of Nathan, we are skeptics.  Sometimes he surprises us, but for the most part we have been trained to expect the worst. 

We showed up to the party with both kids, and their swimsuits in tow.  The sprinkler was out since it was a hot day, and I thought the kids would have a blast playing in the water--at least it would keep them occupied for about an hour.  We changed them right away and both boys were almost immediately comfortable with their surroundings .  Nate usually takes close to an hour to explore before he settles down, but for some reason, this day was different.  Maybe it was all of the kids playing in the backyard, or maybe he just got a special vibe from their house.

For the first time I can ever remember, Matt and I were BOTH able to sit down and enjoy our dinner without chasing children around, stressing about where Nathan took off to, or what type of trouble he found.  We both were able to carry on separate conversations with some other people at the party, and our stress levels during the party were very low.  I was fully prepared to only stay an hour or so because I was convinced that Nate would be a pain, but we ended up staying over their house until 9:30!  Both boys were angels and had a blast playing with all the kids in the backyard. 

I finally got my dose of normal.  I know that these are few and far between, but when we are able to finally function like a typical family, it gives me a sense of new hope. 

On the move!

Because of Nate's Apraxia, he also has some issues with motor planning.  It took him several years to get the hang of riding a tricycle.  For some reason he just couldn't figure out the pedaling motion.  At the end of last school year, he finally figured it out, and last summer was spent riding all around our driveway on his trike.

I thought that it would be a great idea for him to have a real bike, so for Christmas, my parents purchased one for him.  It spent the winter months in their basement, where Nate would hop on and off it, but never attempted to ride.  When it started getting warmer, we brought the bike home.  Again, he didn't really want to ride it, just hop on and off and have us push him around.  He was still hooked on his tricycle.

Just this past month, he's shown more interest in his big kid bike, and has tried to start pedaling.  Well, he finally figured it out!!  He has been riding up and down the driveway on his bike, and yesterday we took him out on the sidewalk.  He had the best time riding from our house, all the way to the corner and back.  He's so proud of himself and so am I.  I have a feeling that this summer is going to be full of long walks with Evan in the stroller, and Nate on his bike.  I can't wait to take him out on the bike trail where there are less bumps and there is more space to ride.

Here he is enjoying his new found freedom

He's at it again

I just don't know what to do anymore.  

I haven't repainted the wall that Nate ruined by peeling off the paint.  It's a good thing, because now he has another wall to match.

I went in to check on him before going to bed, and this is what I found:

Seriously...how the FUCK does he do this????  There was a teeny tiny chip in the paint from the other day when he wedged his bed between his dresser and the wall.  I had no idea that it would turn into another paint peeling incident.  

I'm at a loss.  His room consists of a rug, a dresser and a bed.  There are no curtains because he ripped them down.  There are no toys because he uses them as weapons of mass destruction.  There are no books because he will rip out the pages.  His room is beginning to look like a room at an institution.

I just give up.  I wanted to touch up all the "imperfections" in his room before Evan's birthday when we'll have family here, but now I'm not going to even bother.

I'm at a point now where I don't even get mad.  The first paint incident, I was in disbelief.  The TV made me want to cry and throw up.  This current paint incident just made me shake my head.  Is it wrong that I've just come to expect things like this from him???

Perfect

This is how I feel right about now...

So that just happened

Yes that is my TV

Yes it is very broken

Yes I almost threw up

Nate never used to be destructive as a child.  In fact I used to talk about how good he actually was at leaving things alone.  I could put out picture frames, candles, vases, etc. and they wouldn't even get a second glance.  I have no idea how things got so turned upside down.  I guess Karma came to bite me in the ass?

Today Nate broke our TV.  When I say he broke it, I don't mean it just wasn't working for a little while because a cable came unplugged or something like that.  I mean he broke. the. damn. tv. broke. broke. broke.

I was laying Evan down for a nap, and Nate was downstairs looking at pictures on the iPad.  While reading to Evan, I heard this loud banging coming from the basement.  I had no idea what Nate was doing downstairs, but for some stupid reason I didn't go down to check.  Evan was having a rough time settling down for a nap, he was finally happy with the book I was reading to him, and I didn't think the banging was a big deal.  I had a feeling Nate was mad about something going on with the iPad, but taking out his anger on the TV never crossed my mind.  I thought...maybe he's kicking the couch....maybe he tipped the shelf over that holds the DVDs...maybe he threw the iPad around a few times (it is in a pretty beefy case, so I wasn't too concerned about the last one).  When I finished with Evan, I went downstairs to get Nate and see what damage was done.  Much to my surprise, the basement was completely in tact.  He was looking at pictures, the DVD rack was upright, and there were no broken toes from kicking the couch.  Again-didn't think twice about the TV.

At about 5:45 I was getting things ready for a jewelry party that was starting at 6:30.  I turned on the TV so I could put some music on from one of the cable channels, and much to my surprise it was filled with horrible lines.  I stood there for a second and tried to register what I was seeing.  I began thinking about the pounding that happened in my house a few hours earlier and almost threw up.  Nate threw the iPad a the TV.  Nate threw the iPad at the TV (gag).  Nate threw the iPad at the TV (FFFFUUUUCCCCKKKK)!!!!!!!!!!

I went upstairs to get Matt because:

1.  He needed to know about this

2.  He needed to become a barrier between me and my son

3.  I needed to make sure I wasn't seeing things

We checked out the TV and yes indeed, it's very broken.  The glass is cracked in several spots and it's beyond repair.  I'm sick about it.  We don't have the extra money right now to buy something like this, but the basement living room area is where we spend most of our time.  The kids toys are there, the DVD player is there, everything is down there.  We're going to have to go shopping for a new TV this weekend, and I'm terrified that he'll do it again.  

After I calmed down we brought Nate downstairs to show him the damage he had done to the TV.  Like I suspected, he didn't care.  He has a very difficult time reading people's emotions and understanding how people are feeling which is typical for a child on the autism spectrum.  Showing him what he did had no effect on his conscience, and I'm sure he had no idea he did anything wrong at all since it was such a large span of time between when it actually happened and when I found it--plus when it happened the TV was off, so there was no immediate change in what the TV looked like.  

I'm not sure how much more of his destructiveness I can handle.  It's like a switch flipped in his brain.  I wish I could find that switch and flip it back to my nice little boy who doesn't think that destroying things is funny.

So that happened today.  How is everyone else?

Logging Out :-)

Sending a fax, dropping the kids off at the pool, making a grumpy, talking to a man about a horse, having a BM....

You know what it is, and we all do it.  Now Nate does too.  About a year ago, Matt and I were FINALLY able to get Nate potty trained (due to the other issues he has, potty training him was extremely difficult).  We spent 1 full day in the bathroom and after that he was pretty much good to go.  We've had some very minor pee accidents in the past year, but there hasn't been any diapers during the day.  That is the good news.

The gross news is that just because Nate knew how to pee, didn't mean he was ready to poop on the toilet (TMI?  Sorry!!!).  We spent every single day reminding him that if he needed to poop, please let us know and we would take him into the bathroom.  Well, we had accident upon accident.  Nate had absolutely no problem telling us about his poop, AFTER he actually went.  As you can imagine that led to countless gross clean ups and many, many, many new pairs of underwear.  We tried everything from bribery with M&Ms, fruit snacks, and toys, to yelling, to extra iPad time, to sitting in the bathroom for hours on end.  Nothing seemed to work.

On March 18th we got back from a vacation in Vegas, and Nate was still having issues with #2....until that Tuesday the 20th.  Nate got home from school, and after his homework he asked me for some M&Ms.  I said "first let's go poop on the potty, then you can have some M&Ms."  What did he do?  That little stinker RAN right into the bathroom, sat on the toilet and did his business.  SERIOUSLY!?!?!?  Needless to say, he got a huge handful of M&Ms after tons of cheering, praise, and a phone call to daddy.  

I thought it was a fluke.  Like always, he proved me wrong.

The next day (Wednesday), he came home from school, and about 1/2 hour later he asked me for some M&Ms.  I said the same thing that I told him the previous day.  Well, what do you know- he ran into the bathroom and did it again!  Man was I pumped!  This routine went on for about a week--him asking for M&Ms, then going to the bathroom, then getting his reward.

After about 8 or so days, he came home from school, and TOLD me that he had to go.  WOW! WOW! WOW! We raced into the bathroom, he did what he had do do, and got his reward.  I couldn't have been happier for this amazing and huge milestone that we've been waiting and waiting for.

So, it's been almost a month, and we still have a pretty good track record.  I think that Nate has had 3 accidents total (and I hope I'm not jinxing this!), and is now routinely telling me when he has to go.  We've been waiting for this for about 3-4 years, and it has finally come!  I seriously can't even begin to explain how proud of him I am, and how excited I am about how far he's come.  I've learned that with Nate things are just going to take a lot longer to accomplish.  I might get impatient, depressed, and frustrated while waiting, but I can only be hopeful that (like with potty training) he will eventually get to where he needs to be in life. 

If this grossed you out, too bad...I'm excited about poop!!!

Enjoying his ice cream after a week of success

You might not know this...

I think for the most part, I'm a pretty open book, except when it comes to my feelings about having a child with special needs.  I hide a lot of emotion related to this aspect of my life, and since this is my place to vent and work through my feelings, it's a perfect place to compile a small list of how I'm feeling without actually having to speak. 

1.  I'm scared--I have no idea what Nate's future will be like.  I do know that he is healthy and will live a long life.  What I don't know is what that life will be like.  Will he ever have a girlfriend?  Will he be able to drive a car, or will I have to take him everywhere?  Will Nate ever be able to hold a job?  Will he have to live with me and Matt for the rest of our lives?  There are so many uncertainties that come with a child who has special needs.  Many of the parents I know who have children with special needs have these same fears/concerns, while others are confident that their child will grow to live a normal adult life.  

I'm scared that as he gets older, he will get picked on due to his disability, the odd noises that he makes, and because he's not able to form words correctly.  Kids are assholes to each other, and I am terrified that they will be horrible to Nate.  

2.  I'm jealous--As I have written in a previous post, I am jealous.  I hate feeling jealous, but I can't help it.  I see all these wonderful pictures of families who look so happy.  They all have smiles on their faces, kids who are actually looking at the camera.  Kids who are actually posing for pictures and doing silly things for the camera.  Then, I see my family pictures where we are basically holding Nate down in order to take some type of decent family picture.  He's usually looking off in a different direction or trying to escape.  

I want to do things that typical families do.  I want to be able to go to the store with both of my kids without having to worry about which emergency exit Nate is going to make a beeline towards, or if he will run off in the parking lot.  I want to take him to the Natural History Museum, to a restaurant for dinner, to activities that the school puts of for students.  I'd love to take him to the fair, apple picking, on a hayride, or even have him go fishing with Matt.  I think that he would have fun if he just understood how to act in public.  

It hurts my heart to see Nate struggle so much to learn things that come so naturally to other children.

3.  I HATE kids birthday parties--I hate them mostly because of the above (jealousy).  I see kids who are having so much fun celebrating their special day.  They have their friends with them, are laughing and smiling.  They look forward to opening presents, eating cake and doing fun things with their friends.  We don't get to do that.  Nate has no idea what his birthday is or how exciting it is to look forward to presents and friends.  He loves cake, but that's about it.  I'm a party planner, and love putting thought and creativity into birthday parties.  I feel like I don't get to do that with Nathan.  When we attend parties for his friends, it's almost like he's not even there.  He will sit and eat a piece of cake, but isn't interested in any other aspect of a birthday party. 

4.  I love to talk about my son/I don't love to talk about my son--I like to talk about the progress Nathan is making at school, but a lot of the time it just makes me feel worse because I know that he should be doing so much more.  When people ask me how things are going with Nate, I typically say "Things are great!"  What I really want to say is- "things totally suck, and are really hard for us."   Boy, what a buzz kill that would be.  Statements like that make for quite an awkward conversation.  

5.  I am exhausted--Not only do I not sleep well due to my fibromyalgia, I don't sleep well because I have so much on my mind in regards to Nathan.  I'm always thinking about his speech problems.  His IEP goals, speech services, and therapies are always in the back of my mind.  I lay awake some nights thinking about how we are going to pay for his speech therapy because it isn't covered by insurance.  I'm physically tired from chasing Nate around all day.  I am mentally tired from being stressed about the future.  I am emotionally drained from the peaks and troughs that go along with raising a child with special needs.  In the event that I get a day or two away from the kids, there is always a lingering layer of fatigue that follows me around.

Raising a special needs child has made me think differently about a lot of things in life.  I am am less likely to get annoyed or judge out of control kids because I don't know their whole story.  I have become more sensitive to generalizations and inappropriate slang (like the words 'retarded', 'short bus').   I have learned to become more patient with my kids and others, because we all have our shortcomings.  Mostly, I have realized that with all the uncertainties and challenges that come with raising Nathan, I wouldn't trade him for anything.

My New Favorite Person

University Hospitals has a series of Autism Seminars at their Westlake Campus.  There is 1 seminar a month, and each deals with the different challenges of having a child with Autism.  Although we don't have a typical "autism" diagnosis for Nate (part of his diagnosis is PDD-NOS), we felt that it would be helpful to attend several of these workshops. 

The last workshop in the series was last night, and it focused on Social and Communication Issues in children with autism.  The presenter was Dr. Lisa Audet, and she was AMAZING.  Dr. Audet is a professor at Kent, she is a Speech-Language Pathologist (SLP), and also has her own practice in Speech Language Evaluation, Consultation, and Therapy Services.  I was so impressed by her knowledge and professionalism, that I'd love to take one of her classes at Kent just so I can learn more about speech, language, and how to improve Nate's quality of life.  

Dr. Audet started off her presentation discussing some common pitfalls that occur when working with children with Autism and who are non-verbal.  For the most part the therapists that we have dealt with have done a great job working with Nathan, which is a relief.  There are a few things that she highlighted that we can definitely improve on as well.  She mentioned keeping conversation with an autistic/non-verbal child "real" and avoid saying things to them that you normally wouldn't say in a regular conversation.  I admit that I do some of her no-no's when talking to Nate.  I often tell him to "use your words", say "more" when he wants something, and I say "good talking" to him on a regular basis.  When she used those phrases in her examples, I realized how ridiculous they sounded.  Who talks like that to a typical person?  It's not like when you're having a conversation with your husband you interject in the middle of his sentence and say "good talking!"  crazy.  She gave us examples of phrases and conversations that will encourage speaking and interaction without us actually sitting there coaxing Nate to try to talk.  We have a lot to change in our house. 

At the end of her talk, we cornered her (which I'm sure she absolutely LOVES)!  Matt wanted to know a little about discipline since that's what we have the most trouble with when it comes to Nathan.  She gave us some amazing ideas, and I'm super excited to implement them into our regular routine.  We often have trouble finding Nate's currency--an object that we can take away from him as punishment--and since there is no real currency for him, we have a hard time getting him to listen.  She asked what he liked to do with us, and Matt mentioned tickling/wrestling.  Dr. Audet said "BINGO!  There's your currency!"  Wow, how had we not thought of that?!  Instead of taking something away from Nate in order to get him to behave, we are now going to be providing incentives (seriously, I was a teacher, how did I not remember that!?!?!?).  We are going to make a chart, and if he listens X # of times, he will earn different privileges (extra Ipad time, walks, extra tickle time, etc).  I'm so hopeful that this is going to work for us!

We enjoyed Dr. Audet's speech, help, and overall friendliness so much that we are considering making an appointment with her for a consultation.  We brought more information and ideas home from the 90 minutes session, than we have in the past 4-5 doctor appointments that we have had for Nate.  I guess there is hope for us!!!

Welcome Home

Matt and I escaped our "real life" for a few days to go on a trip to Vegas. 

About 2 weeks before Vegas, I spent some time taking a sports-themed wallpaper border off Nate's wall.  He decided that it would be really funny to tear pieces of the border off, and it was beyond repair.  Instead of having his room look like crap, we just decided to take the border down and repaint.  After some brainstorming, Matt and I decided that a "Map Room" would be awesome for Nate.  He is in love with maps, and has had the names and locations of all 50 states memorized since he was about 4!  We scoured the internet for some awesome pictures, bought huge frames for his giant new maps, found the perfect paint colors, and even hung a chair rail.  His room was awesome. We put a ton of effort into making it just right for him: comfy, not too stimulating, and Nate-friendly.  

Last night (Sunday) was our first night home, and bedtime wasn't too bad!  I thought, "boy I hope we turned a corner!"  Nate wasn't screaming, he wasn't kicking his door, pulling things out of his dresser/closet, or anything like that.  Nate was just playing quietly in his room.  Matt and I went to bed about 9:15, and Nate was still up and playing quietly.  We didn't go in there to say goodnight because we didn't want to disturb him.  

This is what we woke up to....

Nathan had completely peeled off at least 3 layers of paint from his wall (I've never even seen that green or pink color on his walls!).  His awesome map room has been destroyed, and right now I have no desire to fix it.  I know it needs to be done so that he doesn't make more of a mess out of it tonight, but I just don't feel like it right now.  I can't even begin to explain how disappointed I am.  When I opened his door and saw it, I wasn't even mad.  My heart completely sank and I just wanted to sit on the floor and cry.  I took so much time making his room perfect, and he doesn't even care.  He pointed to the missing paint on his wall, and giggled.  I don't think I've ever felt disappointed in Nate's actions until today.  He's done some silly and crappy things in his life, but nothing has made me feel so unappreciated and taken for granted.  I told him how sad he made me, but he just smiled and pointed again to the missing paint.  

Well I guess I'm off to spackle and repaint a bedroom.  If he does this again, I'm covering his walls in rubber like they do for crazy people....