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!?)

How do you parent?

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.

Another IEP

Tomorrow is another IEP.  This is the Individualized Education Plan for those of you who don't know.  To date, Phoebe has had at least 20.  Twice per year, and updates as needed.   I have learned so much about the process over the years, as a parent.  There have been good ones, bad ones, and everything in between.  I have sobbed, laughed, sworn, and nearly thrown up.  No matter if they are good or bad, they are never easy to take.  While the teachers do their best to inform you about your child's positives....the whole process is really about what your child can't do.  Don't get me wrong, this is a necessary process, and what's best for your special needs child is usually figured out.   

As the PARENT, there is inherent guilt.  Why does my child lay on the floor and scream?  Why does she pick her skin until she bleeds?  Why does she tell people she's going to bitch slap them?  (Yes...it's true)  The list is endless.  I have NO idea why she does these things, and I have slowly learned over the years to not take it personally.  It's so hard.  I used to think I was a horrible parent.  I really did!!  I thought I must have done something wrong.  I didn't work, that was it.  I didn't breast feed her long enough, that was it.  I didn't give her enough vegetables, or vitamins.  You name it, I felt it.  Finally, as her mother I had to accept that she was different.  She was autistic, bi-polar, PDD-NOS, or whatever you want to call it.  She wasn't going to do things the way other kids did, and that was a hard thing to swallow.  I wasn't going to be able to brag about her dance abilities, or her test scores.  (nor would I have a sticker that said anything about my honor student)   I did get used to this.  I won't say it got easier, but I did/do know what to expect when IEP time comes around.  

I put my faith in her team of teachers, consultants, social workers, therapists, and everyone else involved in her education.  I go with my gut instincts and try to give them anything and everything they can use to help her at school.  We work as a team to provide her with something that works for her. I know what it takes to raise her--so I'm guessing teaching her is quite challenging.  (and thank you for those who do, and try to) Sometimes this whole thing takes some creativity.   

She is quite the unique child.  But aren't they all? 

Tomorrow is IEP number 21.  Let's see what we can come up with. 

Things change

This year has been full of ups and downs.  In the fall, my 14-year-old started high school.  Well, technically she started high school, and stayed half time at our local school for special needs students.  Within a few short weeks, we (including her full "team") knew this was not going to work.  300 kids pile in to the cafeteria at the high school to eat lunch right along side with Phoebe.  She freaked out.  I don't really blame her.  This can be overwhelming for most people.  This was a breaking point for me.  I can't fight the fight anymore.  While I really want my daughter to be able to write a paper, do algebraic problems, conduct a science experiment and be in the high school musical, this is not reasonable.  These exact things cause the most anxiety in her, and myself.  She has meltdowns, and then I have meltdowns.  (That is not pretty)  She doesn't like these academic restrictions put on her.  She has a hard time processing these things.  Do I think she is smart??  OF COURSE I do.  She is smart in ways that most schools don't measure.

I have stated what Phoebe's strengths are.  She can be a great helper for adults and little children.  She loves to do laundry, write lists, and grocery shop.  She loves to tell me when I am going the wrong way, or that I forgot my blinker in the turn lane.  She can name all the people in my address book, and where they live, how many kids and pets they have.  Sometimes she can even remember a story about them that I might have told.  She LOVES to boss people around (her way of controlling life).

In October, I switched her over to Millet Learning Center full-time.  I gave in to the fact that she won't do math, and won't really do writing.  I embraced her strengths, and love the fact that they do too.  She will still do things that aren't appropriate and seek attention in the wrong manner, but they get it.  They understand Phoebe.  She will still struggle at times, and I'm prepared for that.  I just didn't have the energy to fight the battle anymore.  She's happier, and I'm happier.  She still gets a "school" experience but in a place that is easier for her, and easier for me.

Thank you for all that help our "special" children.  It's not easy.  We know. (We live with it)