Small town life

We live in a small town.  Not a tiny town, but a smaller area.  I live in a great place to raise kids.  I really do.  I love that there isn't traffic, and that I was able to buy a decent house for a decent price.  I LOVE living by my family.  It makes all the difference.  I had the great opportunity to further my education right by my house.  I didn't have to commute.  It made it easy to change my career to better serve my kids.

Of course, there are trade-offs for these such luxuries. I need a decent Psychiatrist that understands autism, and specifically Phoebe's autism.  We don't have that.  I am not saying we don't have good Psychiatrists.  We do.  We just don't have the right kind for Phoebe, and not a lot to choose from.  Phoebe isn't a child that you can sit down and talk to.  She has anxiety about people talking to her/about her and in front of her.  It's weird, but it's her.  I need a psych that understands that.  One that can see me, and maybe her for a short time.   I need a dentist that understands Phoebe's special needs when there, and one that can sedate her for work that needs done.  I have a great one now, who can handle her at times for small amounts of work, and cleanings. (Seriously--he's good, but I can't even imagine how hard it is to do work on her when she's awake) I need a sleep study done, but can't find anyone in my small town who will allow for us to do it from home.  I can't imagine trying to get her to do one at a facility.  It's hard enough to get her to sleep.  Let's not mention that in order to take her to these things, I need to take time off, and get her out of school.  (Ok - that's a given with any office or appointment)  I can name about 5 other things I need, that only big name universities, or cities can give us.

I was told at the Yale Autism Clinic that this would be precisely the problem.  Good news is she has PDD-NOS (Pervasive Developmental Disorder-Not otherwise specified), and the bad news is...PDD-NOS.  There are not a lot of studies and research for PDD-NOS.  Every child with autism is different, and Phoebe is no exception.  Autism isn't a cold, or a flu.  It's not going away, and each year things change and I have to adjust.  (And so does she)  So with that, I'll be making appointments for summer, and driving her back and forth (to the big city) for various things.

Just when I think I can sit back and relax for a bit...

I am reminded that this is autism, and that I'll be looking for better things for her for the rest of her life. (Even if that does take me out of my little town)

HindSight

Recently, I read a great article by a woman who was addressing the question of the cause of autism in her child.  Her child was born with it, and she doesn't go over the why's.  I have said this before that I don't know what caused Phoebe's autism.  Maybe you can decide...

Here's the breakdown of the things I did while pregnant, and for her as a baby and in toddler years:

• I had a normal pregnancy.  I did not take drugs, or drink alcohol. 
• I did not paint during pregnancy.  (Without a mask)
• Phoebe was born via C-Section, when I failed to progress during labor. She was not in any distress.
• Phoebe's breathing was faster than what it should be at birth and she was placed in the NICU.
• Phoebe never stopped breathing, and was pink color at birth. (checked the records on that)
• Phoebe took Prednisone steroid as an infant to help her lungs as she inhaled fluid on her way out.  
• Phoebe was nursed, and given baby formula as an infant.
• I made my own natural baby food by grinding it myself.  I also used store bought. 
• I didn't give my baby juice, unless it was watered down.  She drank tons of water.
• Phoebe drank 2% milk and whole milk. Sometimes organic, sometimes not.
• Phoebe never met her milestones.  She didn't sit up until 9 months.  Didn't roll over until 6 months. And, never put weight on her legs.  (Poor muscle tone)
• Phoebe got bronchitis at 8 months.  She was put on breathing treatments, and another steroid.
• Phoebe was diagnosed with Viral induced asthma, and with every sniffle from a cold, she was placed on breathing treatments.  She was on treatments at least 2 times a month until she was 3.
• Phoebe got RSV when she was 11 months and as hospitalized overnight.  She was given another steroid.
• Phoebe never crawled. She scooted on her butt starting at around 12 months.
• Phoebe didn't walk until she was nearly 2.
• Phoebe's speech was poor and I had her evaluated for speech services at 3.
• Phoebe received speech therapy 3 times a week starting at age 3 1/2, and was seen 2 times a week at the developmentally delayed preschool at Beaumont Hospital. 
• At 4, she started OT for poor muscle tone, and started in regular pre-school.  
• Phoebe ate normal food, and was always eating constantly. She was never full.  She ate tons of fruit, and vegetables.
• We lived in a 1950's house with lead paint that had been painted over.  We had it tested, and it was fine.
• Phoebe did not chew on the window sills as asked by the doctors.
• Our house was located in a previously noted "swamp land."

I can go on, but I think you get the idea.  You decide....what caused her autism?  I have been over it in my mind 1000 times.  Was she born with it?  Did I give her something that caused it?  (Noted here that I had a second child--did same types of things and he does not have autism).

It doesn't matter.  She is Phoebe.  She has autism.  We move forward and make progress. Some days are good, and some days are really, really bad.  

This is autism after all...its unpredictable, and predictable all in one day.

   

"Don't paint the nursery pink..."

While organizing some photos last night, I came upon one from my baby shower with Phoebe.  I can recall the conversation like it was yesterday.  My dad and uncle had learned in medical school that ultrasounds are often times wrong.  I knew I was having a baby girl, as confirmed by an ultrasound.  However, my dad and uncle both said, "Don't paint the nursery pink."   Sometimes ultrasounds are wrong- more times than not with the mistake on thinking it's a girl, and it coming out a boy.  Then you have a nice pink themed bedroom for your baby boy.  (While pink is fine for a boy--it is most associated with girls)

This was ok, because I had never planned to have a pink room for my baby girl.  She was going to be different.  She was going to be special.  Her room was blues, reds, and yellows.  Her theme was bugs (lady bugs, bees, butterflies, etc.).  I didn't want to overwhelm her world with pink and pink things.  I wanted her to be like me...a little girly, but also a little athletic and well-rounded.  I didn't use lace, or ruffles.  I painted her room myself, and it was adorable.  It was different, and unique.

Little did I know, I had set a precedence for how this baby would be.

She was Phoebe:  Different.  Unique.  Sort-of girlie.  Loves sports.  HATES bugs. :)

Autistic.

teenager and autism. not so fun.

Ok, so this post is not going to sugar coat this thing called autism.  It's not going to sugar coat having a teenager (which most of us are perfectly aware of).  The combination of the two seem to be causing somewhat of a problem at our house.  My perfectly complacent little girl has turned in to a defiant little (big) shit.  She has always been really good at mimicking others.  This means she hears things and can spew them right back at you, and in the right tone and context.  (For the most part)  She can say, "DUH!", when it's appropriate.  She can laugh when something is funny, and silly. Most of the time I think she does these things because she knows the correct response, other times she has learned them.  She has had social skills groups, and speech and language therapy since she was about 5 years old.  She also watches television and hears things around her.  I realize she says things also to get a reaction out of me, and others.  (which works perfectly)   For years and years, she has said things to get a reaction.  She doesn't care whether her attention seeking behavior is positive or negative.  It is just that...attention seeking.  I give her a lot of freedoms, but when I want her to do something she flat out refuses.  It's a genuine battle to get her to do it.   There is no filter in this person.  This child.  This autism.  This teenager.  She thinks the thoughts- and says them, and does them.  No filter.

I'm only human.  I'm her mother, but can only be insulted so much and then I have had it.  Being called, "a piece of crap", "dumb-ass", "asshole",  and various other things wears me out.  I pick my battles, but this one is a big no-no.  I run a tight ship at my house.  Autism will NOT be the reason she uses 1/2 a bottle of shampoo during every shower, needs to wear 8 outfits a day, clean herself after using the bathroom, or take care of the dreaded monthly cycle.  (don't get me started)     On the other hand, being a teenager will NOT be the reason she can say what she wants, do what she wants, not clean her room, pick up her clothes, and be a complete BITCH in this house.  She has a 5 step program at school...and SOON she will at home too.  Her favorite things will be earned.  No exceptions.

I'm done being called names, and being bullied by the autism/teenager in this house.  She will do well with the new program because it's essential.  I need some semblance of a life.  And, so does she.

Sleep Waves

Phoebe was an awesome sleeper.  At 4 weeks, she slept through the night.  She slept like a champ. She never cried, never fussed.  When her asthma-like symptoms started at around 8-9 months, everything changed.  I counted breaths, I did breathing treatments, I counted breaths again, and I slept sitting up with her on my chest when the ear infections started.  I would lay with her at nap time, so she would sleep.  (I admit...I slept too)   I didn't sleep at night.  She didn't sleep.  She was up at 6 a.m. every day.  I was fortunate she was a happy baby despite the illness and lack of sleep.

As years went on, the sleeping did not get better.   I laid with her every night starting at age 6 to get her to fall asleep.  During the divorce, I literally had to lay on her floor (because of her twin bed) with a pillow and a blanket.  She would look at me every 15 seconds, and then try and fall asleep.  I would close my eyes, squinting them every-so-slightly so that she couldn't tell.  She WOULD NOT sleep if my eyes were open.  She was afraid I'd leave.  I pretended to sleep...for years.  When puberty rolled around at an early age (9 years), she began to fight sleep.  I would lay next to her (in her new full-size bed) and touch her hair, and pretend again to be asleep.  Once asleep, I would look at her innocent little face.  So sweet.  How could such a sweet face have such issues inside?  I would sneak out of her room like a spy movie in the making.  If I made the floor creak...she would wake up and cry.  She woke EVERY night at 11 p.m. like clock work.  I wouldn't even attempt to go to bed before then.  I'd put her back to bed and start the process over again.  Then during the night, she would wake at 1:30, 3, and 5 a.m. to find food, ask questions, wander around the house and drink water.  I tried benadryl every night for a few years.  (yes- I did)  It would help for a while and then run it's course.  I slept when she was at school, at her dads, and any other time I could fit it in.  I was a walking autism zombie.  

During the earlier teenage years, I tried melatonin after I gave up on the benadryl.  Melatonin worked well to make her fall asleep, but never kept her asleep.  She had horrible days without the proper sleep.  Horrible.  Mine weren't exactly perfect either.  I could hardly function. Neither of us could.

Finally, last year I decided to make some changes.  I changed her doctor and found someone who actually cared about her.  Actually cared about her anxiety, and her sleep.  With a change in her anxiety medication the sleeping started to come back.  It was like a miracle.  I had forgotten what it was like to sleep 6-8 hours.  She had more energy, and so did I.  

Tonight, Phoebe woke up and came out around 10 p.m.  She asked me to come lay with her.  I went in and laid down.  After 10 seconds, she opened her eyes and said, "Mom, you can go...I am going to sleep now."

Sweet words to hear.  For sure.  I'll take the sleep while I can.  You never know what tomorrow brings.

My Life. :)

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.

Tears and more tears

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??)