Describe Autism.

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.

Bad Teeth and the little things

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!

Markers and Lazy Writers- what?

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

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.  

Fear of the unknowns keeps Phoebe from enjoying things we "normal" people would commonly love.  Travel is one of them.  Travel is the ultimate in unknowns.  You can only plan so much, but the rest is up to fate.  The last time I took Phoebe on a plane was to Disney World (with my whole family).  Talk about crazy!!  This trip could not have been worse for her.  She screamed on the plane, tried to get up, cried, etc.  Disney World?  What was I thinking?  There are fireworks, LOADS of people, noises, and scary rides.  What a great mom I am.  We paid the price when she started yelling obscenities at Epcot (and then I started screaming obscenities), hearing about the fireworks.  I immediately took her back to the condo, and decided that day that this was not something I could do with her.  Travel is not fun for her (or me) when we are together.  Now, this latest trip was not to Disney, but to a beach.  How nice and calm right?  Sounds like it to me.  To a child with autism like Phoebe, it's birds (scary), noises, crabs and other weird creatures, salt water, people, and possibly rain.  (Her other worst nightmares)  I might have been able to get her in the pool a few times.  That's about it.  

I felt awful leaving her, but knew in my heart it was the best decision.  She got a break from her brother and I. (and vice-versa)  Do I plan to take her places?  Yes.  We will go up north to our family cottage and do things she has done before.  (but only for a couple days)  And, slowly as years go by I will try and push the envelope a little, getting her to try and do things she hasn't loved doing. (I am her mom after all)

My son and I deserve to have a life that isn't autism once in a while.  We certainly had a great time over Spring Break, and will do it again when we get a chance.  

Sanibel 2014

"hand print in the sand"

Sorry. This is autism.

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.  

Cleaning out

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.

Cough Cough Cough

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!?)