I’m exhausted.  I am doing the job I love, and I am exhausted.  I finally landed a job as an art teacher, and it does everything I hoped it would.  It fills the part of me that was missing.  I feel accomplished that I went back to school during what could be considered the hardest time in my life.  I borrowed a TON of money to do it, but still I did it.  I made it through death and grieving, and other crappy things going on in my family.  I still did it.   I cried through a lot of it.  (Shocking..I know)  I finished school and landed a job without a gap.  That’s damn impressive. (Even to me!)  I’m exhausted.

During these accomplishments, I have continued to raise 2 children.  Anyone who is a parent knows this is a challenge, no matter what your work situation is.   I have my children 90% of the time.  I have watched them finish elementary school, start middle schools, enter high school, etc.  (Still while accomplishing my dream)   I have been teaching one child to be a gentleman, a friend, a good-smart student, a hard worker, a great brother, and a dreamer. (and driving him around the state to play soccer) Meanwhile, teaching the other child to be more independent, have better social skills, and to try and be as happy as possible.  (and toting her everywhere I go – literally everywhere) Exhausting.

If exhausted is the worst it will get…then I’ll take it.  I teach 900-950 kids a week something about art.   That’s amazing! I get to show Kindergarten through 8th grade students what art is about, and how they can love it too. The look when a child is inspired to make art is priceless. Then after teaching my love of art, I come home and get to show my own children something even better.  I get to show them that you can succeed at anything you want to do.  ANYTHING.  At any time.   Even better, I get to watch them do this as they grow.

Yes, I am exhausted, but this is the best exhaustion I have had in a while.

Some people laugh at how easily I can burst in to tears.  I cried when Phoebe was little and she would go to school on the first day.  Literally, every year I would cry.  That small child would get ready for school with her large backpack, brand new clothes, and crisp new supplies just like most other kids.   I would drive her happy little face to school, and walk her in.  Never a tear from her…only from me (after I left of course).  That sweet innocent face, who had no idea she was different.  No idea she would fall far behind her peers developmentally, and socially.  She thought she was like everyone else.  She always loved school, and everything about it.  She loved school supplies, the bus, and packing up her bag.  This is no different at age 15.  Phoebe still loves all these things just like she did at age 7.  In some sense, she is still that little innocent girl, waiting to be just like everyone else. She tries so hard, and has come so far.  She asks questions, surveys her situations, asks questions again and has anxiety when it’s new.  She has been taught how to do these things.  Again, she has come a long way, but still has a certain sense of immaturity.  This will never go away.  It just won’t.  Before her school year ends, we plan for the next.  We know where she will go, and who her teachers will be.    It’s planned out. However, I still cry tears for her every year.  EVERY YEAR!  

Next, comes my son (the baby).  He has always been the baby of the family, and since the age of 3, I have done most of his (and her) things on my own.  I dropped him off at Kindergarten, and he looked at me and said, “I’m going with you.”  I replied, “Um, no you’re not.  You stay here with your teacher.”  With that, I turned and left.  He did fine. (I only cried myself to sleep that night) That seems like yesterday.  It would be years and years before I had to deal with him leaving elementary school…right??  I blinked and it was done.  I didn’t cry dropping him off at school in following years.  He understood.  He was brave, happy and like most of the other kids.  I didn’t worry about him.  I just didn’t.  He was great.  Last Spring, I cried myself through the last 2 months of school thinking about him starting Middle School this fall.  Everything has been completely “normal” for him.  He never needed an IEP, and has done everything “by the book.”  Everything he has done has been a first for me.  I cried when he scored his first goal, touchdown, and was the star in the school play.  I needed a box of kleenex (a box!!) at his 5th grade graduation.  Laugh if you want, but these experiences have all been brand new for me.  Phoebe never did anything like that.  She couldn’t handle any of that commotion, and was not good with crowds, noise, or focusing for long periods of time.  We (the schools and myself) accommodated her, just like you would do for your autistic child.

It may seem silly when I get a little teary as my 12-year-old gets on the bus this fall for 6th grade, but this whole experience is new for me.  He’s a middle schooler.  (MIDDLE SCHOOL!) He will get on the bus by himself, and find his way by himself.  He won’t need me as much, as years go on.

This will never be true of Phoebe, and her autism.  Its just a fact.

(So, let me cry and enjoy these experiences – and go ahead and make fun of me.  It’s ok- I can handle it – WHERE ARE THE KLEENEX??)

I am often asked to describe Phoebe’s autism to people who don’t know her, or me that well.   I’ve described it here in blogs past.   Autism changes for us.  It’s constantly changing.  We have the ghosts of past autism, ghost of present autism, and the ghost of future autism.  There are new obsessions, new advances, and new challenges.  Summer always brings about all sorts of new things.  I can’t imagine what summer is like for someone who LOVES school, her friends, and the constant attention that school brings.

Ghosts of autism past are meltdowns, swearing fits, hitting, constant eating and general unhappiness.  (See previous blogs)  Currently, we have a much happier girl, who has better eating habits (not great-but better), and loves to please.  She is much better at playing with friends, and interacting with people (not perfect…but getting better!).  We watched her go on various rides over Fourth of July at a super loud, obnoxious carnival in traverse city…all with a big smile.  She will help with chores, and even help the babysitter bake cakes.  This leads us to the future autism.  There is a part of her that is  beginning to realize that her life is not the same as other 15-year-old girls.  She asks about driving, and boyfriends.  How does a mom answer that?  NEVER going to drive.  NEVER.  Those who know her, know why.  (Hello- attention span of a fly) Boyfriends.  Wow.  I don’t even know where to begin.  Is there a possibility of a boyfriend?  Of course there is.  Essentially, this brings up a set of questions that I am not ready to answer.  She’s on birth control, but it’s not permanent. There was no question when it came to putting her on the pill.  This girl needs to be protected from predators, and even regular boys.  I will cross other bridges when I have to.  Then there is that unknown for the rest of her life.  What will she be able to do?  Where will she live?  WHO will she live with?  This plan doesn’t end anytime soon.  I won’t get to send her off to college, or with a new husband.  Her new future begins with a new school this fall part-time.  I am reluctant to start her at a new school, and we will see how it works out.  Even her Spring IEP included “future” plans.  Ugh.  Just ugh.

Today, I will focus on the ghost of present autism…just like I always do.  I’ll take the autism today and deal with it, until a new ghost shows itself.  Then I’ll adjust.  Just like I always do.

This is autism…after all.

Phoebe has bad teeth.  Yep, she does.  She had perfect teeth until she went through puberty and was diagnosed with allergies.  I mean perfect.  Starting about 5 years ago, they started to decline.  We have been to numerous dentist, and she hates having anything dental done.  She gets sensory overload.  (who doesn’t)  There is a serious lack of information for dentists on children with autism, and a lack of people who can help in our area.  We have some awesome dentists here, and some have helped her as much as possible.  The essential question is WHY does she have bad teeth?  WHY?  I have never stopped helping her brush.  Twice daily and sometimes between meals.  This child never cleans her mouth out with water or her tongue, and leaves food in there like she is a chipmunk.  Not sure if she’s unsure of her next meal, but that has to get cleaned out!  I have started a vitamin therapy that I researched and hoping that will help a little bit.  It’s a never-ending guessing game with this child, and one that takes it’s toll.  Next week, I will take her to Detroit Medical Center so that she can have surgery to fix all these problems.  It’s not ideal, but has to be done.  I just want this whole thing to be done.  This autism mom is a nervous wreck.  Seeing any child have surgery is excruciating on a moms soul.

On a brighter note, I have seen some advances this summer so far.  At a soccer party for my son, Phoebe went out on the field for the “parents vs. team” game.  She stayed out at the game for the whole time.  This would never have happened 2, 4 even 6 years ago.  She didn’t really play the game, but she was involved and talking the whole time.  It was quite the sight.  Then, I took my son and some of his friends to a local arcade, fun place and Phoebe came along (when doesn’t she?).  She played with these boys the whole time, and never once complained.  She played mini-golf, played games and even did laser tag.  Who is this child??  We were there for over 2 hours…and only at the end did she complain that she had had enough.

After many weeks of no extended break from the kids, I sit here and drink my coffee enjoying the quiet.  While cleaning out Phoebes room this morning I found some of her classic LISTS.  She has made lists since she could write and pointed to lists when she couldn’t.  This list said, “People I like.”  Then it listed, Riley, Greg, Grant, Carter, Mom, Brendan, Nana, Joey, Charlie, Sadie, and the last one said…Phoebe.   That made me smile.

We like you too Phoebe. 🙂

Happy Summer!

It struck me funny this week when a Kindergarten teacher I work with said that she had attended a conference about how markers were making our children lazy writers.  Let me say that again.  Markers are making our children lazy writers.  Really?  I nodded and kept on doing my business.  However, after teaching 4 art classes in a row, and using markers of all different types–it got me thinking.  (Shocker–I know)  Is it really markers that make our children lazy writers?

Let’s remember that some Kindergarten children have had no background, no pre-school and no guidance in writing.  Let’s take that further.  (Stay with me on this) How about the special needs kindergarten children who enjoy the easy feeling of using a marker, and the fantastic sensory sensation it gives them.  Markers usually glide with ease on paper, walls, hands, tables, etc.  How wonderful (and awful).  They come in rainbow colors, pastels, metallic, glitter, neon, etc. etc.  They have different sizes for ease of grip, and different size tips to give you different kinds of lines.  Oh no!  Now, we are learning elements of art with our damaging markers.  (insert sarcasm)

I used to fight the marker thing.  I did the whole, “You should use a pencil and write this way”, with Phoebe. I forced a pencil in to her right hand and told her to write letters.  I gave her stencils and wrote letters myself to have her copy.  She hated it.  Hated every minute of it.  Had meltdowns and threw the pencils at me.  I got her fat pencils, short pencils and mechanical pencils.  NOTHING worked.  She hated them, and me.  Then one day I thought, “Screw it…I’m giving her markers.”  Needless to say, the marker went straight in to her left hand (oops), and she drew all her letters without one meltdown.  Over and over.  She made lists and lists with me.  She scribbled on paper and drew on herself.   Lightbulb moment for me.  Did it matter what tool?  Did it matter that she was like everyone else and used the exact tools forced on everyone?  Nope.  I had great school people that accommodated her.  They let her type letters, let her use tools that most kids did not.   It worked.  She was happy.  (This brings up a whole new set of bigger questions.  Does she need to write at all anymore?  She can type.  Does she need to be like everyone else?  Uh- no…I think we have established that she isn’t like anyone else.)

How about we guide children in our teachings, and our parenting?  Rather than assume.  Use these things to our advantage.  Should Kindergarteners use markers every day for everything?  No.  They should try all the tools, and be taught how they can use them…and when.

Thats my 2-cents.  Lazy marker writers??  Please.

Spring break is over.  It was so nice to get away and feel the sunshine on Sanibel Island.  It was also nice to take my son and spend some quality time with him…alone.  No, Phoebe did not come with us.  I did not do this out of selfishness.  I did this so that we could all be happy on our break.  Phoebe spend part of the week with a sitter, and part of it with her dad.  She was happy to do so.  

Sanibel 2014

“hand print in the sand”

I’d like to apologize ahead of time.  There are going to be many times I don’t call you back, or answer the phone.  There are going to be times I can’t get right back to you, or times I have to cancel plans last minute.  I might have to cancel appointments at the last minute.  The old me (before kids) would have fretted about this…I have learned to live with it.  This is autism. There are times I may ask you to drive my other kid somewhere, or pick him up. This does not come lightly.  (I hate asking for help)  I may not be able to make cookies, or treats for the next day knowing I don’t have a sitter- and can’t get to the store.  If it’s unplanned then it’s not worth the stress to try and take her out.  It just isn’t. This is autism.

I can’t predict autism, but I can predict my own daughter.  I know when she says or does certain things, that I am going to be limited in what I can do.  I know her cues…and she knows mine.  I can tell by her anxiousness, or by her speech that something may not happen for me.  I can plan 2 months in advance, but if she can’t handle it that day (for whatever reason)…I have to cancel.   This is autism. 

I have learned her limits, and know how to push her towards new goals.  It’s a SLOW process, but I get it now.  She’s about to turn 15-years-old.  I have had 15 years experience learning how to judge what may or may not happen. I am not perfect at it, but I am much better than I used to be.  There have been times I left her with sitters knowing she was anxious, upset, and not ok with me being gone.  And yes, it’s a disaster.   I have learned to slowly ease her in to new things.  A few minutes of success is much better than her screaming, yelling, swearing and whatever else she can do to get me to take her home.  She knows now to tell me that she needs to go.  If we have a list, and a purpose–we can do it.  (It’s a 5-minute trip- but it’s successful)

It only took 15 years, but I sort of get it now.  However, it won’t stay this way.  By the time I finish writing this, it will probably change. 

This is autism.  

This weekend I started cleaning out files.  Phoebe’s files.  I cleaned out a file that was no smaller than the size of a stack of about 20 sunday papers.  (a couple feet deep)  From the time Phoebe was 3 and 1/2 years old a paper trail started.  She was developmentally delayed, or ADHD, or asthmatic, and always on the end of the reports…chubby.

In her Head Start preschool, they decided to do evaluations of a preschooler that didn’t fit in the mold of what was considered “normal.”  Even doing an “autism” evaluation stating that it didn’t seem as though she had ASD because she looked directly at the person testing and asked, “WHY ARE YOU HERE?” (Knowing her now–this is pretty funny)  Well, she qualified for speech and language help, physical therapy and a developmentally delayed pre-school through Beaumont Hospital.  I double dipped on the help, as I didn’t think what the school could provide was enough.  They agreed.  Starting at 3 and 1/2, Phoebe went to Beaumont Hospital 3 days per week for preschool, and 3 days a week for Speech and Language.  All the while, I am bringing baby Brendan (still in his carseat) along for the ride.  Eventually, she did Occupational therapy for low muscle tone, and various other muscular issues, and a social skills group to help with her socialization. We were at the hospital therapy no less than 4 days per week.  

Can you imagine the paperwork?  I looked through every piece this past weekend…reliving the panic of a mother who was figuring out just how hard this could end up being.  I remember the feeling of “Why me?  Why her? What did we do to deserve this?” Then I decided…let’s look how far this child has come.  Let’s put a positive spin on this.  She had various speech issues which made her speech impossible to decipher.  Now, I’d literally like to put a sock in it sometimes.  She never stops and is perfectly understandable.  (She’s really understandable when she swears in public- just to annoy me)  In fact her speech is farther along than her actual understanding.  She couldn’t hold a pencil, and her writing was horrible.  Now, she can write, type and use technology faster than anyone I know.  My settings on my devices are constantly changed.

Each year starting in Kindergarten Phoebe had an IEP.  There were 2 per year, not including if we decided to do extra testing or add something to her existing IEP.  Today, she’s in 9th grade (technically).  That’s 8 years of IEP’s (Individualized Education Plans) that are no less than 30 pages long.  The paperwork is unbelievable.

You know what I did?  I shredded everything except for the last 3 years.  I shredded it.  I put it in the past and decided that this is where we start.  Today, we look at where she is and what she can accomplish.  I will not dwell on what was.  I will not look and feel sorry for myself, or feel sorry for her.  Those are emotions I would like to never look back at again.

I will continue to see how far she can go, and in 10 years I’ll shred this paperwork too.

I have a new found respect for Phoebe after having a nagging, respiratory, bronchitis-like cough for the last 2 weeks. It’s wearing on my nerves, and makes me tired and grumpy.  Phoebe spent the first 2 years of her young life on a nebulizer, oral steroids, decongestants, etc. etc.  She even had RSV at eleven months old and spent the night in the hospital. (With me right next to her bed)  This child never cried or got cranky…she was just Phoebe.  Happiest baby ever.  Of course, when she had a temp she was slightly more lethargic, but she always had a smile on her face.  Do I??  Um…let’s just say that’s a big NO.  I spent countless nights in her room, standing over her crib, counting the number of breaths she took.  Do I give a treatment or don’t I?  She couldn’t talk for herself.  She couldn’t say…”Hey mom! I am having a hard time breathing..can you get me some meds?”   So, I was “ON GUARD” 24 hours a day,  7 days a week.   I am not exaggerating when I say when we would be with someone with a sniffle, Phoebe would have it within a week, and be on breathing treatments the next day.  She was a mess!  Ok, fine…I WAS A MESS.  She was just, Phoebe.  Happy, little Phoebe.

Finally, she saw an allergist and was put on a more daily med, and did eventually grow out of it.  She was around 3-years-old.  

At 3-years-old, we started to see more delays than ever.  This is when the autism/ADHD, whatever-you-call-it diagnosis started.  (And, I found out I was pregnant with Brendan)

Looking back, this hasn’t been an easy ride for you Phoebe…and I give you a ton of credit for how far you have come.  Hopefully, you won’t get this nasty cold mom has.

(So, stop drinking out of my glass of water would you!?)

Here’s the question…do you raise a child that’s 14 years-old (with autism/PDD-NOS) like a “typical” 14-year-old, or do you raise her like the 6-year-old she’s more mentally like?  This particular child can do some things that 14-year-olds can.  But, then again there are many things she can’t.  I am finding as time goes on, that this seems to be getting harder and harder to decipher.  I continually expect certain things, and then become frustrated when they don’t happen.  However, sometimes I become completely blown away by the things I didn’t expect, and do happen.  Does that make sense??  I’m exhausted.  Did I mention that?  (Pretty sure most parents are)

I want independence for her, and am forcing myself to try and get her to do these independent type things.  It’s not easy.  It’s a messy messy situation in all aspects of our house.  She has ADHD, and impulse issues.  Her room is messy, her hair is messy, her body can be messy.  I’m beginning to let all this go.  I can’t keep up, and does it really matter?  No.  It doesn’t.  If I were a rich-girl, I would have a maid, a cook, and someone who could help me ALWAYS focus on the important stuff.  What’s important in her life? She needs to socialize, always.  She needs to know how to socialize properly…mostly.  She has to be able to take care of herself…sometimes.  She needs…to be happy.  Ok,  I know…she’s a teenager, and happiness isn’t always on the menu.  How do I know what is autism, what is teenager annoying-ness, and what is general disability?  I don’t…nor will I. (Amazing- reads text message in 10 seconds from across the table.  Annoying- finishes my sentences before I can get them out) I will try and focus on the important stuff.  Happiness, independence, and socialization.

So to answer my own question…I don’t know, and I won’t know.  I will fumble along the way I have been and expect the unexpected.  I’ll be exhausted, and I’ll have some totally frustrating days.  Then that one small step forward will give me uplifting, and hopeful days.

Thank you to all my friends and family who help me,  put up and stand by our “strange” family.