Friday, May 27, 2011

A Sign of Real Comfort

After graduation last weekend my family was kind enough to throw me not only one, but two, celebrations.  The second one was organized by my mother and was over an hour away at my Uncle and Aunt’s home.  The boys and I do not get up there enough, even though a vast majority of our family lives in that area, and hadn’t visited there in about 10 months.

As soon as we pulled in Brian jumped out of the van, I swear before I even had it turn off, and ran to the trampoline.  He loves trampolines.  He really was content to play between there, their camper, and my cousin’s playhouse with all of the other kids.  Their piece of land is nice and secluded and I really didn’t need to keep that close of an eye on him with so much family around.

I was enjoying the grown-up company when I saw my Uncle approach my Mom and whisper something to her.  My Mom hurried next to me and leaned into my ear and whispered, “Billy just told me Brian is in the bathroom and he might need some help.”

I’m instantly up and moving as fast I can without making too much of a scene.  All I can picture is walking into their bathroom and seeing crap wiped all over the place or a complete roll of toilet paper clogging up their toilet. 

I go into their house to find one of my distant third or fourth or fifth  cousin standing in the hallway with a bewildered look on his face.  He’s only seven, and Brian makes me look bewildered most of the time, so I knew something was up.

I turned into the bathroom to find Brian…….completely naked.

Turns out he did need to go number 2 and he did it.  I couldn’t find any evidence anywhere in the bathroom.  He just always thinks he needs to get completely naked when he does a bowel movement.  Doesn’t do it when it’s just number 1, but always does with BMs.

The problem was his pants and socks were damp from playing in the wet yard.  Brian will deal with wet clothing, but once it’s off he will in no way put them back on…even if the spot is just a millimeter wide.
Of course, I didn’t pack any extras.  Why would I?  That would mean I actually plan ahead and am prepared.  Thankfully it was a quick fix as my Aunt threw his clothes in the dryer and went through her daughter’s clothes to find something we could use.  I had to turn down the blue sweatpants with “Justice” on the butt in rhinestones, but we found some black leggings with just a little bit of lace on the bottom that we could hide in the socks. 

Thank goodness for family. 

Really out of the whole ordeal, the only thing that stuck with me is the fact that Brian had a bowel movement in a strange bathroom!  That’s a big deal! 

Despite not seeing our extended family that often I guess he feels comfortable there.  I think my Uncle and Aunt should feel privileged that he let loose in their bathroom.  He doesn't bestow that honor in just any old place.

Thursday, May 26, 2011

Rotating Teachers

Brian’s IEP was moving along so nicely.  We talked about ESY- not completely crazy about the amount of time our district is providing but it’s better than last year, next year’s teacher, and how well he’s doing.  I saw his Kindergarten teacher hold back tears as she tried to convince me to let him do a third year in her classroom (oh I kind of want to but I know we need those extra years for life skills when he’s a teenager/young adult- I really just want her to move along with him each year!).

Everything seemed to be going fine as we talked about increasing direct instruction next year, communication boards, and adaptive PE. 

Then as the meeting was drawn to a close the principal dismissed everyone except for myself and Brian’s case manager to tell us that Brian’s special education teacher would be leaving. 

I’m angry about having it spilled upon me like that.  I felt like the entire meeting I based around the fact that I’m completely confident with her skills and her relationship with Brian.  Now I just increased his direct instruction time to be with a person that I don’t even know.

I know each new school year for a child with autism is a transition but my poor child has had it amplified every year. 

When we had our spring IEP before he was slated to start Kindergarten we met a very nice special education teacher and he seemed so innovative with his ideas and I was very excited for Brian to start his public school education with him.

We were told near the end of the summer he moved to a principal position elsewhere and we then had to meet a new special education teacher…who was a joke and was “let go” after Brian’s first year.  I’m not the only cynical parent that would attest to that statement- I know many who had to complain about her and her “expertise”.

Then we did summer school last year and were introduced to a wonderful woman who we were told was going to be Brian’s special education teacher.  We were so excited he got to work one-on-one with her during the summer school session as he would be comfortable with her when fall came.

A few weeks before school started we were told she was moved to another special education slot in the district and we now had a new teacher.

Ms. M turned out to be the special education teacher.  She came from a background with working at a residential home with children with autism.  She was knowledgeable about Brian’s diet (her mother actually bakes and sells allergen-free goodies).  We loved her.  She was great with Brian and an integral part of Brian’s success this year.

So if you are counting that is four special education teachers we’ve been introduced to in the two years of public school that Brian has done.

I hope the next one can fill Ms. M’s shoes!  And that s/he sticks around for a while!

Tuesday, May 24, 2011

Do You Know What Time It Is?

Peanut butter jelly time?

Nope, unfortunately.

It's IEP time.

Again.  Already.

Brian's IEP is this afternoon.  For some reason I am feeling totally unprepared.  I kept digging trying to figure out why this year seemed so different than other years.  I've been doing this IEP thing for six years now between him and his brother (though of course in the beginning stages they are called IFSP here in Maine- or is that a global name?).

Corbin's is Thursday and I feel super prepared for his.  I'm gonna go in there and take some names and demand all kinds of things.

Then I realized that was it.  Brian has had such a great year compared to all the other years.  I think this might be his most improved year yet.  I'm not use to going to an IEP meeting and not having a list of things I want changed.  I guess I feel more confident going in there with things I want changed than not having that list!

Not to say I don't have major concerns.  First grade is much more different than kindergarten.  I know we will be making a lot of changes, including a lot more time in the resource room getting the academic work in there.  There won't be all that great free play or quiet time like they get in kindergarten.

Hopefully it will all work out okay.

I'd much rather just be wasting my brain cells watching this...

Friday, May 20, 2011

Looking Towards Our Future

Tomorrow I graduate.

I graduate with honors with my first degree of three (I hope).  Sure, my children will probably have families of their own (god-willing) by the time I receive my Masters, but that's what I'm shooting for.

I am damn proud of this accomplishment.  The past two years were hard.  It was hard doing this as a mom, especially as a mom with a child on the spectrum.  It's hard for me to make sure I take time for myself and probably the reason I really pushed myself to succeed was because I looked at this whole pathway as a choice for not only myself, but for my children as well.

They were "my reasons", as I have said time and time again.  I want to do better for them and provide them with more.  I want them to be proud of me and to know how important education is.  I want them to know that no matter how hard things seem in the future, they can push and persevere through it.

I'm so proud of myself that I didn't just allow myself to be a college drop-out.  I dropped out of college when I was 18 because I thought I had this rosy life in front of me.  I was told I would always be taken care of and that if I stayed in college that certain "caregiver" wouldn't be able to be faithful to me (I know- I should have started running right then and there).  I thought I would get to be a stay-at-home mommy and wife.  Well, that didn't happen.

But we all learn from our mistakes.  Life is good now.  Though things in the past have been far from perfect it all led me to where I am now.

It's onwards to a brighter future at this point.  I couldn't be more excited.  And though I often say I do things "backwards", it's exciting to share this very important day with the two people that mean the most to me.

Wednesday, May 18, 2011

March to Your Own Beat.

Some things just aren't worth fighting.

Like this day for instant.

It was time to go to Corbin's baseball game.  Though Brian had been properly dressed for school, as soon as he had come home he had put on these Red Sox pajama pants- not only are they about two inches too short for him but he also had them on backwards.  He was wearing blue-striped socks and a Merry Madagascar pajama top (which was thankfully hidden under his coat).

I don't really care that he wants to wear pajamas, backwards or in the right direction.  If it makes him happy and comfortable I'm just gonna go with it until I can afford to buy him an entire wardrobe from soft!

Those Buzz Lightyear shoes he's wearing, do you remember those (if not, click there!)?  He asked for them, using his words, and he has worn them every. single. day. since he got them.  The result?  They now have a hole in the bottom of them.  Am I throwing them away?  Nope.

I think it might be because I'm kind of a slacker, but I just don't feel like fighting with him to put on a new pair of shoes.  He owns five other pairs of shoes- some of them have never been worn, two of them have been worn on special occasions.  He hates them.  I can't force him to wear them.  Would you like to be forced to wear shoes that you don't want to wear?  That's my argument anyway, when I get reprimanded by my ex for not supplying him with adequate footwear (yes, I acknowledge that shoes with holes in the bottom aren't exactly the best footwear for my children).

So to make him happy, make me happy, and make Brian happy....I'm off to do some internet shopping for identical shoes.  Wish me luck!

Sunday, May 15, 2011

To the Best Mommies I Know...

I love holidays.  I love the traditions, the time spent with family, and I also love that they give me a chance to clearly see the gains Brian makes from year-to-year.  For example I can think about how he was actually engaged in dying eggs this year and did as many as his brother did compared to last year when he just did a couple and he mostly just threw them into the cups of dye.

Holidays can also be hard and lonely.  Lonely in the fact that kids with autism may not understand what the holiday is, what it consists of, or what the meaning of it is.  I sometimes find Mothers Day kind of hard.  Call me selfish, but I wish Brian would wake up and say “Happy Mothers Day!” and shower me with kisses and eagerly anticipate giving me whatever handmade treasures he has come up with.  I know he loves me and I hope he is grateful for all that I do, but that acknowledgment would be nice.  I don’t feel too bad for myself because I do have an older child who does all of those things to the umpteenth degree.  Corbin blessed me with jumping on me in the early hours with lots of hugs and kisses.  He had wrapped a half-dozen handmade gifts as well as a cookbook that he had spent his piggybank money on at his school’s book fair.

Looking at the cookbook Corbin bought.  I had no idea he had bought this.
It was completely on his own.  Love that kid.

 I’m not saying Brian didn’t proudly hand me the flower he had planted for me after he watched Corbin give me his gifts but the connection between the flower and the holiday was not there.  
Brian handing over the his underwear.  This shouldn't shock anyone by now.

But it makes me wonder about families who have just the one child that is on the spectrum.  It especially makes my heart go out to those single mamas with that one child. Did they have someone tell them what a great job they are doing?   Because in my mind Mothers Day is a very special day.  It’s a day to honor Moms everywhere.  And no one deserves that honor more than Mothers who have children on the spectrum.

So even though this is a week late, let me tell all of you out there what a great job you are doing.  Let me tell you I know and I appreciate all of the sacrifices you make for your children.  I want to tell you I know the heartbreaks and the hardships you endure and that I fully recognize the blessings and the joys that you incur from the simplest things in life.  There is no finer mother out there, than those who give it their all when it comes to their children with special needs.  Happy belated Mothers Day to you all!

Kite-Flying Fun!

I had the brilliant idea of having a kite-flying party for Brian's seventh birthday.  Seriously, I take party planning pretty seriously- ask my family- they hate me for it.  I get all stressed out about stupid little details.

This was the first time we invited classmates.  First time ever.  I was so stressed out about that as well- because no one RSVPed (such a thing of the past, I guess).  Not that Brian would've noticed if no classmates showed up, but I would've.  However, in the end, we did have classmates show up.  Phew, I didn't have to send out any hate mail ;).

I made a cute cake with a kite-flying scene on it.  It was gluten, casein, and soy-free.  But not sugar and food dye free.  And my little boy sat on the toilet about five times that evening.  Was it worth it?  I'm not sure.  He sure lit up to see that cake and he loved every single bite of it.

The kites were a great idea.  No, Brian doesn't like to fly kites.  He likes to watch them.  His classmates and cousins enjoyed flying kites (and adults too).  It turned out to be VERY windy that day and we had a lot of exciting, nose-diving kite- moments.  

Brian still hates the Happy Birthday song for some reason.  He seemed to hate it even more so this year than last.

Brian's big present from us was a new bike.  He was very excited!

Overall it was a wonderful seventh birthday for my little man.  I saw a lot of smiles and that's all that really counts.  I can not believe it's been seven years.  Happy Birthday Brian!


Thursday, May 12, 2011

Special Olympics

This was our first ever Special Olympics event and it was a blast.

It wasn't without it's hitches, but overall it was a wonderful day.

Him and his team all looked so adorable in their little wind suits.  

Can't tell which one is mine?  He's the one giving the crowd the middle finger.

He competed in all three events that he signed up for. He seemed to like all of the events....except for maybe the standing long jump.  Though I'm not sure if it was the event he was crying about or the fact he had to *gasp* wait his turn and/or that he had to do it three times (repetition is great when it's on his terms).

His ed tech was all ready to run the 50m dash with him but he took off and did it independently.  He actually even took his thumb out of his mouth for the 50m dash.  Josh and I stood at the finish line with popcorn and his Woody doll.  Yet when he crossed the line he just went over to a stranger and gave them high five.  

 Brian's regular-ed class skipped classes to come over to cheer him on.  He certainly has quite the growing fan base.

I really value the idea of Special Olympics and how cool and important it was for Brian to have a day that his skills (whatever they may be) were celebrated.  We'll definitely stay a part of this organization so there will be many more proud and funny posts regarding our foray into athletics with Brian.

Tuesday, May 10, 2011

Dark Confessions

I'm behind on blogging.  Really behind.  I've had birthday parties, random stuff, and Special Olympics to blog about.  

A couple of weeks ago I wrote this post though.  It's outdated now as Brian's birthday has passed but I still want to share it.  I didn't know if I was going to share it, I just saved it as a draft.  I was scared to be judged or looked upon badly because I had these feelings.  Then last night I was reading Kim Rossi Stagliano's book (which I love!) and she said in one of the chapters that sometimes her daughters' birthdays can depress her.  It made me think I wasn't alone and to put on my big girl panties and just post this damn thing already.  

So here you go- a week too late.  And I'll try to get those happy posts out soon!

Brian's birthday is coming up.

Most of the time I get really mushy about these things.

However, there is this one thing that pops up every once in a while.

I don't say it out loud because it's depressing.  I usually don't even let myself finish the sentence when it's in my own head.  Yet, I think I try to be honest here.  This is a place for me to let it all out.  My place to confront the thoughts I don't want to admit I have.  I confront them, then I move on and enjoy the positive things.

So here it is.  I'm putting it out there.

Brian's birthday sometimes depresses me.

I feel like another year has gone by and he's still so behind.  I feel like we just lost another year where no big gains have been made.  Maybe there were things I should have been doing but wasn't.  Another year of so many steps back and not enough forward.  Another year of "what ifs?".

I know this probably makes no sense since this past year really has been successful for him.  And I know I can look back at my hundreds of posts and see that he has made gains.  Yet, he is still years behind developmentally.

And it breaks my heart.

I know I talk about acceptance a lot.  Yet, I do, honestly, struggle with it.  It is effin' hard for me to accept that my little boy may never catch up to his peers.  It is so effin' hard for me to accept that his life as an adult may be nothing like I had hoped it to be.  It is so freakin' hard for me to accept that he may not be able to experience the joys of life that we all take for granted.  It effin' kills me to think that instead of looking at jobs and colleges and girlfriends and traveling when he turns 18, we may instead be looking at group home choices.

So another year has gone by and we're still kicking.  We're still fighting to get my little boy's future as bright as it can be.

And he's still here reminding me of how perfect he is, no matter what.  That smile of his really can bring me back down to earth and help me put things into perspective.

I'll get over this wall, like I do every time I run into it.

Monday, May 2, 2011

Future Tycoon

I know I often brag about how wonderful, generous, empathetic, sensitive, honest, etc., etc. my older son, Corbin is.

Most of it is true.

But lately his businessman (step-on-anyone-to-get-what-I-need) ways have been coming out.

First it started with him asking me why I helped an elderly woman in the grocery store parking lot find her car.  Sure, he might have had a point because if she was so confused that she couldn't find her car (which ended up being right where we started) there may have been a possibility she shouldn't have been driving.  I told Corbin I helped her because it was the right thing to do and it makes me feel good to help others.  He replied, "Yeah me too, if I get paid."

Over vacation he started to write a story- I wanted to work with him on handwriting so I encouraged him to write a story about catching the Loch Ness monster (his newest obsession).  He told me he wanted to sell copies of the book and he was so ecstatic when a few friends and family members said they would purchase a copy when it was done.  When a friend asked if she could have hers autographed he said, "Yeah, for another dollar."

Then to top it all off, tonight he asked if he could make up a story to tell me at bedtime.  It went something like this:

"One day I was going for a walk when oh my goodness I saw a pile of ones on the road.  I picked them up and yelled out "Whose money is this??".  No one answered.  I thought, "Okay it's my birthday, I guess I can keep this money".  I walked further up the street and there was a pile of fives!  I yelled, "Yoohoo!! Anybody out there?"  No one answered, I thought it was my lucky day!!  I looked up the street and there was a stack of tens!  Again I yelled but no one was around.  And you won't believe this- there was a pile of hundreds!  Hundreds, Mom, can you believe it???  I suddenly had to go to the bathroom and I stopped at a store where there was a bathroom and opened the door and SURPRISE!!!! My family was in there and said, "Happy Birthday!  All that money is for you!!"  And we had cake and ice cream.  The end."

Complete surprise ending, huh?  Celebrating a birthday in a public restroom.  Love it.

I use to hope Corbin would stay on his chosen career path of being a scientist, but I think he's gonna be happy being a businessman with his shrewd sense of business and obvious love for money.

Sunday, May 1, 2011

Walk for Autism 2011

April is over but that doesn't mean spreading awareness, asking for acceptance, and continuing to educate stops now.

In fact, today, the first of May, we participated in the annual Walk for Autism event put on by the Autism Society of Maine.  This was our fifth year participating as Team Brian.  As always, it was a wonderful time.  Being surrounded by family and friends that come together because of my amazing little boy blows me away every time.  We're so lucky to have such an amazing support circle.

Team Brian

The Man of the Hour

Josh, myself, and the boys

Brothers. Perhaps my most favorite picture of the entire day. 

For more pictures visit the Walk page I made!