Holiday time again

It's that time again.  The Holidays.  It's a weird time for my autistic kid.  She gets anxious, and undone with no school, and having so many unknowns makes her crazy.  Again, we plan and hope for the best.

What started as a way to make evenings easier at holiday time has turned in to a full on tradition.  When I first moved back to Saginaw, night time was the hardest for me.  I was alone, and unhappy.  It was the first Christmas without a husband to help, and the first holiday in my own house.  One crazy kid night, I decided that jammies, hot cocoa, and a ride in the car to look at Christmas lights was the answer.  While it was only about 20 minutes of quiet...it was a moment of peace for me.  We brought blankets, and listened to Christmas music.  The dog always came along.  At first, I was pushing them to get in the car, then after only a few short trips...we had a tradition.  Every year since then, Phoebe has asked the week of Thanksgiving about our "light trips." I was the one holding back thinking I didn't really want to get in the car and drive around, in the last couple years.  

Tonight, was the first of the many asks about the light trips.  I told her that there might not be many up yet, but she was insistent that we go. Brendan ran and got his jammies on, and Phoebe got the dog.  We hopped in our mini-van (how cliche) and off we went.  We did see a few lights, but not as many as we hoped.  Phoebe replied..."It might be early. We can go again in a few days."  And, both Brendan and I said..."YEP.  It's tradition."

So, here it is again.  The start of our trek to look at lights every other night.   If only life could go this smoothly.  :)

Happy Turkey Day!

Thoughts on this whole thing

Parenting is a challenge.  Parents all know that.  Most of us went in to the whole thing knowing this ahead of time.  Recently, my mom asked me..."Did you think you could ever have done this?" And, you know...I'm not sure I thought I could.  I know for a fact on one lonely day while waiting to move back to Saginaw, I sat in my living room thinking those exact thoughts.  "How am I going to do this?  How will I ever be able to be alone, and accomplish parenting and everything else?"  This among the typical sobs that I had then.  Not to mention the thoughts on never finding love again.  (that's a whole different blog)

I had a 3 year old, and a 5 1/2 year old when I moved here.  (old news- I know) That 3-year-old needed me as much as any baby, and the 5-year-old needed me even more with the addition of an autism diagnosis.  She was always in need of me.  I took on that role without hesitation.  I cried a lot, and I stressed a lot.  I took a LOT of Prilosec.  Single mom life.  I can't even stress how hard this is, but most of us take it on without question.  We just don't.  Do we have a choice?  (well- maybe some do, but the choice was clear for me)

This month has brought on new challenges and new things.  I took them on, and I am dealing with it as I always have.  Do I collapse in to bed at night?  YEP.  I get a lot done, and then I really do.  I sob on and off, at random times for random reasons.  These times are much less than they used to be.  This autism thing is an emotional roller coaster.  You have to have some thick skin for this...and I hope mine has grown to be that way.   Just when I think it's going good...autism SMACKS me in the face and brings on a whole new challenge.

When you ask how I do it...I don't really ever think of how I do it.  I just do, and so would most of you. And, no...I do not want to teach autistic kids.  No offense, but I get enough of that at home.    

Bring it on autism...I am about ready to buy a suit of armor.

(Now do you see a good reason for ART?)

Changes again

Once again, I am preparing myself, and Phoebe, for some big changes.  Phoebe has behaviors.  Really bad behaviors.  (and I mean REALLY bad) Can she help it? Does she like doing these things?  Who knows.  The bottom line is she can't do these things around school mates.  I understand that.  Do I like it?  Not at all. Have I learned in the last 13 years of her life that the things I hate the most, are usually the things I can change the least?  Yep.  This is the story of my life.  I so wish Phoebe could sit in a class and do reading, writing, math and science.  I do.  It's my least favorite feeling in the world.  I have a child with behavioral problems.  You hope to raise polite, polished, somewhat smart, happy person.  I am doing some of that, but she is anything but polite and polished.  I have accepted autism, and PDD-NOS, and behaviors, but I fricking hate them.  I REALLY do.

A long time ago, I gave up on the idea of graduation, graduation parties, and that big old DIPLOMA.  At this point...WHO CARES.  I am just going to be happy if she can get through the day without saying, "you're a shit", or "I hate you" to any of her family, or her teachers.  (or throwing chairs, desks, pencils, etc.- you get it)  Yes, Phoebe is autistic, but that is just the beginning.  She doesn't understand consequences.  She doesn't get subtle hints.  She doesn't get that if you say something horrible...it hurts someones feelings.  I DO.  I understand that she is going to miss out on things, because of her disability.  (As much as I don't want to think about it)  The bottom line is...if she's happy, I'm happy.  If giving her less constraints means more happiness and better behaviors.  Let's go for it.

Because eventually, she'll change things up and we will be doing this again.  We will again make  changes and do what makes her happy (and less apt to make her have behaviors).  I'll keep doing it...until I collapse.

That is my job.

MOM.

More and more

I am taking on more and more.  Everyday, I add something on, and say to myself.."it's fine."  I have 16 credits this semester.  Way more than I ever would want, but feel as though I need to get done with my certification sooner than later.  I need to get a job doing what I love, and time is not on my side.  So, I'll take on more and more.  Oh wait...let's add in the parenting part.  Each day, there are things that I must do as a parent, and then I add on something new.  I add on soccer practice, and soccer games.  I add on homework for Brendan, and help with projects.  "It's fine."  (these are things I like) I add on daughter/son and mom time, homework for him, social skills help for her, bathing, brushing teeth, feeding, etc. .  Oh- and homework for me.  Now, let's add autism.  Each day brings something new, and something different. "IT'S FINE." I am not really sure what that will be, but I know it when it happens.   I can't anticipate these things.  It's like a puzzle (imagine that).  It could be screaming for no reason, picking, no socks, or more socks, and FOOD, FOOD, FOOD!!  The never ending battle with food.

There are days I just want to SCREAM at the newest autism-ness we have started.  I guess I am that eternal optimist hoping that one week she will just be "better" and I'll be able to say..."Wow, this week was easy!"   "I THINK I am fine." I hate to say it, but each week seems to be getting harder.  Is it puberty?  Or is it autism, or both?  (I hope its the first)  Or is it me? (Well- that can't be!)

Somedays, I teeter on the fact that I might go right over that edge if one more thing is added.  Just one.  But, then again...I'm pretty sure I'll be fine. :) (at least I hope)

Insurance

Today is a banner day.  I got a letter from Blue Cross Blue Shield that states that Autism treatments will now be covered.  Such as: Applied Behavioral Analysis, physical, speech and occupational therapy.  Nutritional counseling as part of ASD treatment, other mental health benefits or medical services to diagnose and treat autism spectrum disorders.  Applied behavioral analysis  helps with behaviors associated with ASD.  From 2008 until last year, I spent nearly $3000 on ABA therapy for Phoebe.  She went 2 time monthly at $50-55 per session.  Let's be honest, I borrowed the money to pay for it.  I don't have an extra $100 a month for anything, and I think many families have to borrow if they even have that option.  I borrow for almost all the extra things I do for Phoebe.  I am lucky...I have that option.  I only started ABA when Phoebe was in 5th grade.  Can you imagine the cost if I had started when she was 5?  And, not to mention the speech, and OT that I was taking her back and forth to.  It would be too much.

The parents of autistic children are stressed enough- and by that I mean me.  At least now, one thing is a little lighter on me.  ie: Bills:)

The other one.

Let's face it...the other child in an Autism house gets the shaft.  All around in life, my Brendan gets the bad side of autism.  If I have to face it - he has to face it.  If she has a meltdown and I have to deal with her, so does he.  He can't run away and hide.  He can't escape the meltdowns.  He listens and takes it on.  He has to explain her, and try to understand her.  This isn't easy for a 10-year-old.  He is only capable of understanding so much...and this is a lot.  We have been over this before, and I think everyone understands that despite being in a single-mom house, and having a sister with autism...he is a remarkable young boy.  (and that isn't just mom bias)

Recently, we were given the opportunity to go to Universal Studios with family for a birthday.  I went over this in my mind so many times.  Could I just take Brendan?  Would I break Phoebe's heart?  I planned the trip, and made arrangements for my mom, and her dad, to take her for the long weekend.  I told her about the trip.  Her response..."is there going to be fireworks there?" So, I replied "yes." And, she said, "have a good time, mom."  So, Brendan and I got to go, and be together for the first time ever.  (well longer than a day or two).

We flew down on a Thursday morning, and from the moment we left the house, he had a smile a mile long.  Did I have guilt?  I sure as heck did.  Is that normal?  God, I hope so.  I checked on Phoebe as best I could, and even got an email from her that said..."i am sad."  Which made me feel even worse.  However, my mom had it covered, and her dad made her weekend special.  I had nothing to worry about.  (Unlike last year when I laid on the floor and cried when my mom and I went to Vegas- more on that later)  We spent 4 days together enjoying the parks, and enjoying time together as mother and son.  We laughed...a lot.  We went to see Harry Potter at Universal.  We bought a ton of junk that we won't ever remember.  We drank butter beer.  We ate cotton candy (YUCK), and got candy at Honeydukes.  We did it all.  For the first time, I cherished EVERY moment of it, as hyper as he was.  I loved seeing him have no stress about his sister, or his life.

He got to be Brendan...10-year-old boy.  And, I got to be Beth...mom of Brendan, not mom of Phoebe, the autistic girl.  It was all about him.  As it should be sometimes.

IEP...IEP

Ok, so yes I am going to be a teacher, and yes I do know a lot about IEP's.  The thing is, I know a lot about IEP's because I have been sitting in these meetings since my daughter was 5 years old.  Sometimes they are fast, and and sometimes they are unending.  The longest one went over 3 hours.  When these kids reach puberty- LOOK out.  Everything is intensified, even the IEP's.  I've cried...I've laughed...I've even felt like throwing up.  It doesn't matter if the schools are doing everything they can for my child.. I still feel horrible when my kid is THAT kid.  My kid is THAT kid who pulls down her pants.  My kid is THAT kid who yells obscenities, and screams for attention.  Yes, she does these things.  YES, it's a horrible feeling to think she does that.  I want to run right over to school and walk her through her day, so that I can SCREAM at her when she does these things at school.  (Will that help?  NOPE- just make it worse)  I just can't help it.  As a mother, and a concerned one...it takes it's toll.  It's my kid that the other kids look at.  It's MY kid that adults look at.

I have no idea why she does these behavioral things.  Well...that's not entirely true.  I have lived with her long enough to have a good idea why...but essentially don't know exactly the reason behind it.  It is it purposeful??  That is the question of the day.  Sometimes it seems completely purposeful to call me an idiot, or tell someone that I smack her.  And, then there are times when I can see in to those beautiful green eyes and know that she is seeking an answer to something.   That is the bulk of it.  She can't express certain feelings, thoughts, and ideas.  (Others she can OVER express - like bowel movements - lucky me) She can talk, but can not express.  I even forget this.  She seeks the attention of me, and anyone who will listen...good or bad.  Do I have moments that I wish she was just "normal"?  Yes, of course.  Is that normal?  I sure hope so.  Do I want her to be on the cheerleading team?  The soccer team?  Yes.  I really do.  But, for now I have to be happy with a day that is all GREEN on her behavior sheet.  Today was one of those days! All Green is a HUGE improvement over a week ago.  I'll take what I can get.

Teaching these kids is challenging enough...but parenting them is nearly impossible. Maybe an increase in prozac is in order for me.

After all - she is still my baby girl...and this road is a long one...with an end not nearly in sight.