An Answer – And a Name Change 7/1/2011

So yesterday was D Day.  And we got what we were expecting:

Official diagnosis: Autism.

I’m now amazed at how easy it was to hear.  No, it wasn’t easy to hear, but in the moment it wasn’t DEVESTATING.  It was a jolt for both of us, kinda like a zing through our bodies, like a quick wave of anxiety but then gone.

The whole diagnostic experience was positive actually.  The Occupational Therapist (OT), Speech and Language Pathologist (SLP) and Developmental Therapist (DT) that examined Bubba were SUPER nice and throughly enjoyed our special lil man (completely genuine by the way, either that or they’re really really good actors).  The doc was nice too.  We were given a lot of suggestions, such as getting him into Occupational Therapy and Developmental Therapy as soon as possible, possibly starting PECS (Picture Exchange Communication System) to help him build muliple word sentences outside of scripts, and using Social Stories to help him deal with things like hockey and baseball games (social stories are hand-written picture books about the experience, the idea being he reads them before going to know what to expect).

So now we have our answer, and a direction to go.

And we’re really, really ok.  Big A has a great attitude about the whole thing, really positive, and it helps me to not dwell, not wallow.  I’m not saying that it won’t get to me now and then, of course it will.  But I can forever look back and know that on the day we found out, I was ok.

We are committing ourselves to staying positive, and in that spirit, Big A decided that we are not going to publicly broadcast Bub’s diagnosis on facebook.  I am in total agreement with his reasons: he wants us to be able to control how it is talked about.  We are completely willing to talk about it, it IS NOT A SECRET and WE ARE NOT ASHAMED.  But anything we can do to minimize negative reactions from other people, we will do.  We realize that we’re gonna hear it anyway, but the point is letting it “all hang out there” is inviting reactions and comments that will only bring us down.  Big A says he wants the world to see Bubba, not Autism.  Our child is not a label first.  And he feels that putting it out there on facebook would make it a permantent public record, not just a piece of Bub’s puzzle.  Of course we realize that autism will always be a part of Bubba, but it’s only a part and will be in flux his entire life.  We will work to minimize the effect it has on his life, therefore we don’t want it to be the first thing others associate with him.  In that spirit, regular readers of this blog (all what, 2 or 3 of you? lol) will notice names have been changed.  I’m now completely going with nicknames, to keep anything I say on this blog from becoming a permanent part of Bub’s history.  Again, not hiding anything, but this blog is to help me deal, not to effect him.

So here we go folks, we’re in for the ride of our lives!

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D Day 6/29/2011

Tomorrow is D Day.  Diagnostic Day.  Diagnosis Day.

Let me back up.  Earlier this summer, we found out that we were being referred to our school district/SEDOL (Special Education District Of Lake county) by EI (Early Intervention, state program through which Bubba has been receiving speech therapy, paid for partially by our insurance and partially by us) for evaluation since he will be aging out of EI at 3 (in September).  I had been hemming and hawing about having him go through a medical diagnostic to determine a medical diagnosis, but was pretty much still in denial and kept putting it off.  I decided since he would be going through a school district evaluation he wouldn’t need the medical diagnosis.  Deny, deny,  deny.  Did I spell that right?

Then we had the meeting with a rep from SEDOL and a rep from EI.  Turns out they don’t want to do the school district eval until right before his 3rd birthday, so they have a true representation of his needs as he transitions into the school district run program.  Sure, makes sense.  But that means we would end up spending the summer not addressing anything but speech.  Sure I have him in parent/tot swim lessons in June, and 2 day a week day camp in July, but no focus on his deficiencies.  Most of June, all of July and August, most of September could be lost, time we could have been spending teaching him to do/deal with what is a struggle for him now.  That wasn’t sitting well with me, even in my denial.

I was chatting about being unsure with Bubba’s speech therapist, the Awesome Miss R, and she said “well ya know, if you have the medical diagnostic done while he’s still in EI, they pay for it”.  As in free.  FREE!  Well that pretty much changed my mind.  I called my EI coordinator, got the paperwork, filled it out (now that was an exhausting process… really?  like I remember what Bub’s 1 minute and 5 minute APGAR scores were.  I was a bit busy 1 minute and 5 minutes after giving birth… I know they were good but the actual score?  Not a clue) and sent it in.  I got a call less than 24 hours later from Superwoman, the lovely lady with the heavy Indian accent (hence I missed her actual name) that does the scheduling at the place where you get the medical diagnostic done.  Superwoman said the earliest appointment available was October 5th… UH OH!  Bub’s 3rd birthday is late Sept. … EI won’t pay for it unless it’s before his 3rd birthday.

I basically groaned: “oh no…”

and Superwoman said “wait, you’re in EI aren’t you?”

Me: “Yeah, and his birthday is…”

SW: “Ok, I’m putting you at the top of the waiting list, marking it high priority, so as soon as we have a cancellation you’re first in.  Sometimes we get a cancellation the day of…”

Me: “I can drop everything and be there in a half hour” (ok not really but let’s let her think so…)

SW: “We’ll call you as soon as someone cancels, I promise”.

I thanked her profusely and hung up, already praying that someone would cancel before late September … Asked everyone I know that believes in God to pray too…

Superwoman called me back 2 days later, asking if I remembered her (duh).  Told me we were on for this Thursday at 9 AM!  Thank you to everyone who prayed!  I told Superwoman she was my hero (these diagnostics cost THOUSANDS of dollars, and who knows if insurance would even cover part?  she saved us a ridiculous amount of money we don’t have!!!)

So now it’s tomorrow.

D Day

I’m beyond excited.  Scared.  Anxious.  Dreading it.  Anticipating it.  I want it to hurry up and get here.  I want it to never come.  I want it to be over with.

By the end of the day tomorrow I will have answers.  I will have finality (for now) and no more wondering, waffling, exhaustive thinking: autism? pdd-nos? just speech and social delay (therefore can be overcome)?  I will have a direction: ABA therapy? social skills group? addressing sensory issues?  OT therapy?

As of tomorrow it will be a whole new world, and I won’t be able to live in my little bubble of contemplation and denial.  Tomorrow in fact will probably be life changing.  How do you face that without anxiety?  Without fear?

I’m so glad Big A will be going with us tomorrow, because I don’t think it’s something I could or should handle by myself.

If you pray, pray for us please.  Not for one outcome or another, just pray for us to have strength.  And acceptance.  And hope.  And love.  Tomorrow won’t change at all how much I love my darling boy, exactly as he is.  Tomorrow the clouds will be lifted in our life and we will be able to see him more clearly, to be able to recognize what his strengths, weaknesses and needs are.

No matter what tomorrow brings, Bubba is still the best thing that ever happened to me.

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I Broke Today 6/10/2011

I broke today.

Completely snapped.

Curled into a ball on the floor sobbing.

I don’t want this.  I DON’T want this.  I don’t WANT this.  I don’t want THIS.  I DON’T WANT THIS!!!!!

I don’t want Bubba to have problems sitting through a meal.  I don’t want him to have an overwhelming compulsion to get up and run and crash into the couch over and over.  I don’t want him to have to do it again and again while he’s supposed to be sitting and eating.  I don’t want him to get breadcrumbs all over the carpet and peanut butter all over the couch.  I don’t want him to have to eat gluten free casin free bread that crumbles so easily.  I don’t want to be getting upset about all of these things even though I know he can’t help it, and the GFCF diet is for his own good.  I don’t want to watch myself lose it over things so insignificant as crumbs on the floor and peanut butter on the couch.  I don’t want Bubs to laugh at me as he watches me cry.  I don’t want for him to not understand that I’m upset and crying.  I certainly don’t want him to understand WHY I’m upset and crying.

I DON’T WANT AUTISM!!!

I’m not as close to acceptance as I thought I was.

I didn’t realize I’d have to accept myself and my own shortcomings as well as accepting that my. son. has. autism.  I can’t even actually say it out loud yet.

This isn’t who I want to be.  This isn’t what I want for my family.  This isn’t what I want for my precious boy.

AND THERE’S NOTHING I CAN DO ABOUT IT!!!!

and there’s nothing I can do about it.

nothing.

so powerless.

so helpless.

so completely at the mercy of a terrible monster that I can’t even see, let alone fight.

I have always, always been able to do something to make my life better when it got bad.  I have always had the strength to end bad things, put them behind me and move on.  But I can’t end this.

it won’t end

it will always be there

I have no idea what form it will take, but

it. will. always. be. there.

I know there are a lot of therapies, and practices, and theories and things I can do with Bubba to help him grow and learn.  I know there’s hope for recovery and possibly someday a cure.  But today, right now, there’s nothing I can do.

I hate waiting.  I hate anticipation, even of good things.  I hate suspense, I hate surprises.  And now I have to wait and anticipate.  I have to wait for the paperwork to come so I can fill it out to hopefully get Bubs a medical evaluation before he turns 3 (so the state pays for it through the Early Intervention program).  I have to wait for the school district to call me (not until sometime late July/early August) to set up their evaluation to determine where he will be placed after he turns 3.

Usually when I break and have a good cry, I feel better later.

I don’t feel any better.

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Proof of The Plan 5/29/2011

“I think about the years I spent, just passing through.  I’d like to have the time I’ve lost, and give it back to you.  But you just smile and take my hand, you’ve been there, you understand.  It’s all part of a grander plan that is coming true.” ~ Bless the Broken Road by Rascal Flatts

So why did I name my blog “Proof of The Plan”?  Well I’ve been living my life for the past probably 10 years believing that God has a plan for me, and that even though I might not understand why things are happening the way they are, why I have to make the choices I have to make, there is a reason for it all.  And I keep having it proven to me over and over again.  I can now look back over my past and see exactly why things happened, to prepare me for the life I live today.

Why did I make the mistake of marrying the wrong man when I was 23?  Why did I have to go through an unhappy few years and then a painful, draining divorce?  Well, now I know it was to #1 put me in the mindset to make huge changes in the way I was living my life so that I could go down another (and better) path.  I never would have considered leaving the Chicago area (and my parents) and moving away if I didn’t feel the need to escape the situation.  And #2 it was to give me the perspective to appreciate what I would eventually find with my husband Big A.  While I’m sorry that my ex also had to go through the pain of unhappy marriage and divorce, I don’t regret the experience.  Because I became a better person on the other side.

So because of wrong marriage and subsequent divorce, I ended up escaping to St. Louis, where I by complete chance interviewed at a school for autistic children (and was hired).  What followed were 3 of the hardest, most grueling, most rewarding years of my life.  Working at that school with the most severe of autistic children satisfied some deep need in me that I didn’t know I had.  It was brutal.  It was heartbreaking.  It was tremendously rewarding.  It fostered a sense of sisterhood among the staff that I have never experienced before or since.  I loved more passionately that I ever had before, and that love was for my students, and for my dear teaching assistant.  But this wasn’t a life I was able to live for long.  It took too much out of me, because I gave it my all and then some.  I wasn’t in a good state of mind.  The stress was a little too much for me, especially because I had been emotionally weakened by the divorce.  I self-medicated with alcohol.  Often.  I spent a lot of money on frivilous things.  I dated the wrong men.  Many of them.

So I came to realized I again had to make a change.  Actually, my mind made the decision for me.  I kind of had a mini-breakdown, amplified by being in a bad relationship with one of those wrong men.  Why did all of this happen to me?  Well, again I needed to be put in the mindset to make a change.  I needed to come home to the embrace of family.  I needed to recharge.  I needed some time to pull the covers over my head and get back to what I really wanted out of life.  So that’s what I did.

And then, when I had licked my wounds, had recharged my emotional batteries, I was finally ready… I met Big A.  The right man.  We were living together within a month, and then we got engaged… married… and were blessed with our 2 beautiful boys.

I had the Rascal Flatts song played at our wedding reception, and I sang every word to my husband.  Because although my road had not been a straight one, it was still the right one.  Well, my broken road did not end with my marriage to the right man.  The plan was still going…

Now I know.  God was preparing me for where I was meant to be in this world.  I was meant to be Bubba’s mom.  That’s why I married the wrong man and then divorced him, to give me the motivation to move to St. Louis where I would gain the experience and understanding of the condition, world and community of autism.  That’s why I had the breakdown, to give me the motivation to move back home so I could meet Big A and have Bubba.  With all of Bub’s delays and “issues” coming more and more to light, I see more and more of the plan being revealed.

And I put my faith in the idea that this, too, is happening for a reason.  I just don’t know what the rest of the plan is.  That’s ok, because God’s plan for me has turned out pretty great so far.

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The Face In The Mirror 5/23/2011

As we all get older, have you ever looked in the mirror and been surprised at the face looking back at you?  That person, there.  She doesn’t look like me!  At least, not the me I think I look like.  I think I too often look in the mirror with my mind’s eye rather than my real eyes, so I see myself as I think I am, not as others see me.  But once in a while I clearly see that face in the mirror (sheesh, and most of the time I don’t like what I see, but that’s another blog about losing baby weight, coloring grey hairs, etc.).

I have, in the past few days, gotten a clearer view of the person looking back at me from the mirror and who she really is.  Boy is she not who I thought she was.  I thought a lot of myself and ended up taking myself down a peg.  Or twenty.  Or two hundred.

The person I thought I was:  I thought I was pretty dang smart.  I have a degree in Early Childhood Education.  I’ve worked at various teaching jobs in my 13 years of post-college work, everything from daycare to preschool to subbing in elementary schools.  I also spent 4 years at 2 different schools teaching autistic kids.  I actually considered myself border line expert about young children’s development, and about autism.  I’m super independent and thought I could do everything myself.  I faced parenting as no big deal, because I already knew it all.

Wow was I wrong. WOW

I’ve figured out I don’t know shit.  What I do know was pretty situation specific.  A lot of what I learned has been since outdated by newer research.  The experience I have from the 2 different autism schools I worked at was simply classroom experience.  I paid pretty much no attention to how the rest of it works.  I was very judgmental of the parents of my students (I so wish I could contact each and every one of them and appologize).  I probably wasn’t that easy to work with because I thought I knew exactly what I was doing and what everyone else should be doing.

I’m seeing myself for who I really am: the mom of a (probably) autistic child.  I’m lucky.  He’s really super high functioning.  He has language and works to use it, works harder to learn it.  But back to me… I don’t know what I’m doing.  I don’t know where to start.  I have a million questions.  I need to reach out to others to help me and teach me.  I can’t do this alone.  I’m not even sure anymore what a typical child should be doing at his age.  I’ve forgotten a lot of what I knew.  I’m realizing (and regretting) how much I ignored, chances where I could have learned about therapies and coping strategies, what family life is like, what path to take, things to try.

So now I look in the mirror.  I see older.  I see somewhat helpless and needy.  I see naked, stripped of who was supposed to be there.  And then I see: a boy standing next to me.

Bubba was always next to me in what I thought I saw in the mirror.  Who he was supposed to be is who I always saw.  Way too much in the past 2 1/2 year I looked with my mind’s eye instead of my real eyes.  You see, I was so smart, so educated and experienced with little kids.  My child was going to be advanced.  He was supposed to do everything early, and be everything a parent could wish their child could be.  Happy, loving, compasionate, smart, a good sleeper, a good eater, the list goes on and on.  I honestly BELIEVED that that’s what kind of child I was going to have.

But look there, at my Bubs in the mirror.  How bitter and sweet to see him for who he really is.  He is happy.  He is smart.  He is a wonderful sleeper.  He loves us, although we’re having to show him how to be affectionate.  But he is also speech delayed.  He doesn’t have a lot of appropriate play with toys, although he’s getting better with that.  He self-stims a lot.

He is not who he was supposed to be.

But what a wonderful bundle of ups and downs he is!

I cried a lot yesterday.  I cried because I’m not the me I honestly thought I was.  Bubba has helped me learn this.  So I start over, not from scratch but from here forward, becoming another me, definitely a better me, a more compassionate me, a less judgmental me.  I also cried for Bubs.  Not the Bubs that is, but the Bubs that was supposed to be.  I had to let him die.  Because no matter how much he advances, works, improves, my Bubs is never going to be that Bubs.  It was really hard to let go of that Bubs, kind of like at the end of Titanic when Rose lets Jack slip under the water and disappear.  Her promise to him was to never let go of the promise that she would live her life fully.  She kissed him and pushed him away, saying “I’ll never let go, Jack”.

So I kiss you, the supposed-to-be Bubba.  I promise to you that I will never let go of this:  I will accept my Bubs for who he really is.  I will celebrate every milestone he hits, every advancement he makes, WITHOUT REGRET.  Any time he comes close to being the Bubs I thought he would be, I will smile in memory but I will not mourn the difference.  I kiss you, supposed-to-be Bubs, and I push you away, to let you slip out of sight.  Because the Bubs I do have is going to help me be the me I was supposed to be.

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It’s A Beautiful Morning 5/20/2011

What a wonderful morning we had!  Finally some nice weather, so I decided to take both boys for a walk in the double stroller to get myself some exercise.  Monkey (the baby) fell asleep (sort of) on the way back, so I parked the stroller in the driveway and decided to try to do a little more cleaning up in our landscaping out front.  Of course getting anything accomplished while keeping one eye on Bubba is usually self-contradictory.  But he seemed to want to be near me instead of trying to wander off.  He usually cannot seem to tear himself away from watching the traffic on the main road (we live on a small 6 house culdesac off the main road of our subdivision, so we can see quite a few vehicles depending on the time of day).  Today he did name a lot of the vehicles that went past, but he also was noticing what I was doing: picking dead leaves out of the pebble bed lining the front walk.  He came over and tried picking up pebbles to put in my bucket, but I told him no rocks, just leaves and showed him what I was picking up.  Well my darling boy sat for 1/2 hour and picked leaves out with me, saying “bye leaf” every time he put one in the bucket!  HE ACTUALLY HELPED!!!  We also had what counts as a conversation about a truck that went by pulling a boat:

Me: I see a boat

Bub: I see a truck

Me: You’re right, there was a truck.  What color was it?

Bub: Yellow truck. Yellow boat!

Me: That’s right, the yellow truck was pulling the yellow boat!

I’m so glad I’m letting myself enjoy these moments.  I actually did not give one single thought to what age this type of conversation should have happened at (for once).

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A Clear View (for once) 5/19/2011

Just had a wonderful moment that I had to share: Bub’s favorite “stim” book was in need of repair, so I put it up on the high counter in my kitchen over a week ago. When I picked him up out of his chair after dinner tonight, he spied it without my realizing it. He went running around the house saying “red truck, okay!” so I asked him (somewhat absentmindedly) if he saw a red truck (thinking he had looked through the window). Then he started saying “book, okay!” Then he actually came out with “red truck book, okay!” while trying to go up on his tippy toes to see the book on the counter. Wow it took him a lot of thought and work to get the point across! I normally kind of hate him having this book, because all he does is stim off of it. But the boy practically put together a whole independent sentence to ask for it, and he was so genuinely happy when I figured out what he wanted! I plopped my butt right down on the floor with packing tape and taped the whole thing together while he watched, then gave it to him and thoroughly enjoyed the beaming smile on his face. I realized that sometimes it’s ok to let him stim, because it makes him happy. What mommy doesn’t want to make her little boy happy?

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