Wednesday, March 23, 2011

Why It Is The Way It Is

A few weeks ago I spent the day with a friend.  We picked her kids up from school and drove exactly 2 minutes.  It might have been less, I don't remember, because we were looking for a house with black shutters.  Anyhow, I remember thinking thats it?  We're here already?

I've gotten some flack for being freaked out about showings for our house and how "OMG" I make the whole situation.  To me, it is OMG.

When when we first decided to advocate for AJ to go to his current school, we started talking about moving.  That was over two years ago, when we toured the school and knew it was the right fit for AJ.  After taking our parents and showing them where the school was, and their comments being "Where are we going?" and "How much further?!" and "You can't drive this every day" we knew we weren't crazy.

We thought about it and thought about it and came up with reasons why we should wait.  We knew it would be difficult.  We knew it would be hard.  We knew AJ's school district would eventually say "No, he can't go there anymore." We even packed up boxes one summer and planned to list/move in the fall. It didn't happen.

All of that stress transfers into today's stress of actually having our house on the market.  And now I realize all of that avoidance has made it that much harder.  I have no desire to approach our home district about schooling for next year, yet that's just what we'll be doing in May because of how the timing of all of this played out.

They say selling your home/buying a home is one of the biggest stressors in life.  Um, yeah.  I totally agree.  Even though we already went through buying with this house, we have never had a house on the market and then looked for another house.  And while I hear of stories of people who have had 173 showings and have had their house on the market a whole lot longer, I don't feel that makes our situation any less of a situation.  Because I'm feeling the stress.

I have a hard time keeping our house in exact showing order.  I have a child with an agenda a mile long and two gigundo dogs.  The cat doesn't count, she's self-sufficient.  This housing market is tough.  I take the suggestions our realtor gives us and own them.  I take the feedback we get and (after fuming for a few hours because I take it personal) work on what I can.  There are some places I actually do draw the line.  No I'm not putting in new windows, did you fail to notice the new furnace, boiler, flooring, bathroom, and kitchen cabinets?!  Hint Hint!

I clean my little heart out and try to have our house look how it does on our online listing.

Hello.  My name is Heidi Schmidt.  I'm a control freak.  Nice to meet you.

The little things mean something these days.  If doing those little things will sell my house, well then heck ya, I'm down with that.  (Did I just type I'm down with that?)  Things that stress me out?  Trying to juggle two dogs, who for whatever reason love to snooze in the living room, when you want to clean your carpet.  Or your kiddo who purposely spills his apple juice 10 minutes before you have to walk out the door before a showing.

All of these things happened last night and this morning, just before our showing.  The showing I learned about yesterday.  Requested for right smack dab in the middle of the day.  AJ's sick and I'm sick.  Fantastic.  I kept AJ home and packed all of us, dogs too, in my HHR and took off.  Sadly, I left the horn at home.  Its all we needed to complete our clown car.  Seriously.

We ran errands and then I decided to drive back to the house to see if the showing had happened yet or not.  Our realtor had once mentioned that we could park close by and just watch if we wanted, instead of leaving for the full-time.  When I came back and realized no one had been here, we parked in the neighbor's drive and waited.  I saw a car pull up with the prospective buyers and left.

Fast forward through lunch in the car, dropped AJ off at therapy, enjoying a Starbucks, picking AJ up and discovering the dog had jumped the fence (backseat) and ate a yogurt, we finally made it home.  To where I anxiously ran in the house looking for a realty card.  Usually the realtor's leave one so you know they've been there (I didn't know that, did you?).  No card.  I have no idea of the showing happened or not.  Grrrrrrrrrrrrreat.

We've had several showings now, and each time my little heart thumps with all sorts of emotions.  The more we have, the more anxious I am in hopes that this showing someone will make an offer.

An offer that would make our lives easier.  I cannot fathom driving two minutes to AJ's school.  There is a huge different between 2 minutes and the current 4 hours I drive each day.  I can't even imagine how much time that would give me to do things without calculating how much time I have for insert activity here minus driving time.  I am constantly turning down appointments for both myself and AJ because of driving times.

I miss seeing picture of my baby boy on the walls.  We've been prepping to move for so long, I haven't a clue how long they've all been down to make our house look "homey yet generic".  I'm ready for a new space to call our home.  And yes I know our situation is unique and at the latest we'll be moving late summer, but my habit of wanting everything "NOW!" just like most of us is rarin' and ready to go.  I know I know I know.  But its still hard.  And stressful.  You can't please everyone, but you want so badly to please at least one person so that they'll like your home...which allows you to move on with your life.

They say its not personal. It is soooooooooooo personal.  At least to me it is.  This has been a long time coming and now, its just dragging.  Like a ball and chain.   Blech.

I'm picturing our new house with a big bow on it, with a note on the kitchen counter that says "Just a little something to completely change your life."

Your New House

Tuesday, March 15, 2011

Tuesday's 10

1. Well, its OFFICIAL!  Jeremy earned his Bachelor of Science in Nursing degree!  Two years of hard work and he's finally done.  He did a happy dance last night...I'm sorry all of you missed it!

2. We qualified for funds through the Family Support Program 2011!  We are thrilled!  What this means: We can use these funds to purchase equipment for AJ, pay for respite care, even a fence for the yard!  I was amazed to learn that funds can be used for everything from studs to drywall to equipment or toys for a sensory room for AJ.  Once we move, we're dedicating a space in the house to AJ.  A sensory/play room, full of all his equipment/toys/and bins o' stuff!  We will be contacted mid-year to make sure he still qualifies (ummmmmmm ok) and to discuss how they'll distribute the funds.  HOORAY!

3. Today was Gram's birthday. She would have been 91.  Ironically, I ended up honoring her today.  When I was in high school I worked at a retirement community.  For a few years a group of us, from the same high school worked in the prestigous dining room of the independent living wing.  When I saw the mass of media Gram had, I knew exactly where it should go.  I donated her media collection, everything from Casablanca, Bob Hope Specials to JAG and The American President.  Everything her generation will enjoy, and more.  Happy Birthday Gram!

4. I saw an ambulance today, on the opposit side of the median and headed the opposite direction, stuck in traffic for almost a full minute.  The ambulance was going "Lights and Sirens" which means its an emergency (not like being in an ambulance isn't an emergency) and that means you MOOOOOOOOOOOOOVE!!!  Did you hear me screaming?!!!! Two cars sat in the right hand "turn or go straight lane" and they didn't budge.  Turn right and bust a "U-turn" people! Ridiculous. I've been in the back of an ambulance, scared beyond belief, with my young son.  And in that ambulance I had a brief conversation with the medical staff on how frustrated it is when people don't move.  So this is my plea-MOVE PLEASE!!!

5. A classmate of mine from high school was tragically killed last week.  While we weren't close, I still remember his smile.  I don't think I ever saw him frown.  EVER.  He was a jokster, a class clown, but with class.  At the tender age of 30, his death is a shock.  Facebook has played a huge part in uniting everyone and sharing news.  Our class lost another classmate during our Junior year.  We've been through this before-and I think its a bittersweet bond our class shares.   I imagine Mike would say something like, "Life is short, people.  Live it up!"

6. I'm anxiously awaiting information regarding a challenger baseball league.  I read about the league last year in our UCP newsletter and we figure AJ is big enough to participate this year.  Exciting!

7. All good things must fade, right?  We had two weeks of "YAY! Botox!" and then AJ started growing again over the weekend.  He's having a bit of an issue walking and is super tight.  Sometimes I secretly chant to his brain, "send the message to loosen the muscle, send the message to loosen the muscle." Apparently his brain doesn't have ESP. 

8. No Katy Perry, I'm sorry to say I never feel like a plastic bag...drifting through the wind.  Sorry.

9. AJ has used a tricycle over the last few weeks at school.  Last week, when the weather seemed warm enough to be outside with a hat/coat, I pulled out his tricycle.  He's sooooo close to riding on his own.  I'm thrilled he gets the concept, now we just have to teach him how to pedal independently. 

10.  I've been researching locations for AJ's birthday party.  Let me say, the rates for a birthday party at a water park are insaneInsane.   For just a few hours of swim time, a cake they provide, and a small space. I think we're going to go with a different plan.

Monday, March 14, 2011


Last night Jeremy and I watched a few shows from our DVR list, one of them being "Off the Map".  If you haven't seen it, its the newest creation from the minds of those who created Grey's Anatomy and Private Practice.  We said we wouldn't get sucked in.  We did. 

The episode was called There's Nothing to Fix. {You can watch it by clicking on the episode title} While there are always multiple story lines, one in particular sucked Jer and I further in. 

A set of new adoptive parents brings their baby girl to the clinic.  Something is wrong, and they aren't sure what.  The parents share how they've traveled in a group and everyone else's baby is perfect, and they can't even get her to burp.  One blood test later, the child is diagosed with leukemia.  Options: return her to the orphange or keep her and deal with the leukemia.  The parents forge forward, until the mother is drapped in a gown and mask and someone hands the baby to her.  She freaks out and leaves.  The mother decides she doesn't want to parent, so they ask the clinic to call the orphange.  Before the orphange comes, the father is found next to his daughter and pledges to be her father, even when that means divorcing his wife.  He picks the baby girl up and knows exactly what his purpose in life is.

Now, set aside your thoughts about my corny review, and realize I just about bawled myself right off the couch while Jeremy said "Awwwww," aloud. 

I don't think parenting comes naturally to all.  I really don't  Clearly, this woman was a good actor because I wanted to reach through the screen, punch her, and scream this baby neeeeds you.

One of the questions I despise hearing is "How do you do it?" 

I think I've changed my answer to this question. It used to be "You just do."  For some it is that way, for others it is not.  Parenting is hard enough.  Parenting special needs, and multiple special needs is a whooooooole different ball of wax.  I chose to be a parent.  To me, thats very black and white.  Either you are a parent, or you don't want to be.  Black. White.

As soon as I saw my son's referral photo, he was my son.  Plain and simple.  I took on the duty of getting him home as soon as possible.  If that meant filling out a billion forms. Fine.  If that meant interviews.  Fine.  If that meant visiting him in a foreign country twice.  Absolutely.  We were fighting for him even before he was in our arms.   We've always felt a sense of urgency when it comes to AJ.

When he was diagnosed, that only made us fight harder.  Ugh.  That mother character from the show is still rubbing me the wrong way. 

When AJ was placed in my arms for the very first time, I knew I was meant to be his Mommy.  Walking away has never been an option. No matter what, we keep loving.  We keep fighting on his behalf.  Because to us, its natural. 

Sunday, March 6, 2011

What's He Doin'?

Physical Therapy
AJ had another set of botox injections a week ago.  Both in his left leg, hamstring and calf.  To read about the use of botox with cerebral palsy patients click HERE.

This was his second set of injections and I was a bit unsure, considering we never figured out how well the first ones worked.  After seeing his PT last week, I'm thrilled to report that the botox is doing its job.  It seems the dose was just right, and loosen him just enough.  Too much and he'd be more woobly than he already is.  Now is a critical time, where we need to keep him loose and are once again using Kinesio tape on his left leg to deter his leg from rotating in. 

After a lot of back and forth between AJ's PT and his CP doctor, we've also added UCB orthotics to his apparel.  Instead of taking him in to have a new UCB molded, therefore billing insurance, yada-yada, his PT thought maybe there was a way to take apart his AFOs (that we had stuck in a drawer) and use the bottom as a UCB.

After consulting with AJ's orthotists, we took his old hinged AFO (like this one):
(Image from here)

and took them apart.  By using the bottom piece, voila-UCB. 

(Image from here)

They are working well.  AJ remembered what they were and when we only put the one piece on his left foot, he picked up the other piece and handed it to me, raising his right foot.  Apparently, he likes to match.  While he doesn't need both, they must make him feel balanced, and its certainly not harmful for him to wear both. 

Botox usually lasts 4-6 months, but with AJ's super high metabolism, his will last around 2 months.  This is a critical time for consistent physical therapy, taping, the UCBs and using his TENS unit, treadmill walking.  Basically whatever we can do to keep him loose and encourage proper movement/alignment while he's nice and loose.  It is amazing to feel his hamstring loose instead of feeling like a rope.

Occupational Therapy
AJ is doing a great job pulling his own zipper on his coat up and down with the help of a small keychain (bigger surface to grab).  We are dressing in standing every morning, after we pick out our own clothes of course.  Some day soon I hope he'll start to hold on to his dresser instead of me! 

He opened his door by himself this morning, so I'd say we've met that goal.  He's also started opening the screen door, walking out to the porch, turning around and slamming the door in my face.  Lovely.  I'm actually thrilled he's doing this.  His use of a fork is much improved and his cup skills have just skyrocked.  He's showing an increased interest in Mom and Dad's big drinking cups.  Oh boy.  He's now able to lean over the bathroom sink (its kitchen height-so this is a challenge) and reach the knobs for the faucet.  More like touch them.  I give him another week and he'll be able to turn it on himself.  And yes, I actually am excited about this.

We're still working on stickers.  Why the boy insists on crunching them in his fingers I don't know, but we'll keep trying.  He actually doesn't try to eat them or destroy them anymore-so thats progress. 

Feeding Therapy
We're working on what I call Fair Foods and Sides. AJ's had hot dogs, like any other kid, cut up and then cut up again.  He graduated to the dog, cut into regular slices. Now we're on to eating a hot dog in a bun.  He blew me away two weeks ago, when his feeding therapist reported he bit into both the dog and bun-together.  Just the week before we were separating the two to try and get him used to one at a time.  We'll be moving on to burgers on buns, chicken sandwiches, corn dogs, and any other type of mash-up foods that we can think of.  In addition to that, we are working on vegetables of all different textures.  Its definitely not a taste thing, its how its presented to him.  Adding cheese sauce to things like broccoli or cauliflower helps AJ manipulate the food and break it down easier. 

We are increasing AJ's sessions with his feeding therapist (who is an SLP), adding one session per week where we will work solely on SPEECH.   During our last visit with AJ's CP doctor, she voiced her deep concern for re: speech therapy for AJ.  While there is nothing big enough to show up on AJ's MRI, there are definitely some short circuits going on.  He is severely apraxic.  While he is, clearly, understanding and his receptive language is exploding, he has no way to turn it around and respond...turning the input into output.   And he wants to!

AJ had his first tear free week last week. HOORAY!  I'm so proud that he's approaching novel activities with less protesting.  He gets super excited when he sees me packing his lunchbox because he knows that means he's eating lunch at school.  I was a bit worried how he'd do after being off for five days before going back last week-and he did just fine.  HOORAY!

We'll be having our parent/teacher conference next week, which will be chalked full, believe me.  It is an important meeting, with lots of information to cover.  It feels like an IEP, just with less people.  We'll be discussing his upcoming IEP (in two months), ESY, next year, and I have a typed outline updating his school staff on all he's doing outside of school.

We recently saw AJ's neurologist and received the "all clear".  He'll stay on the same medication dose for his Keppra and we'll follow up in a few months.  He was pleased with his walking/stability, his head growth, and he interaction during the appointment. While at the appointment, his neurologists asked how he was doing socially.  To which I replied "horribly".  I shared that AJ's CP doctor and I had had the same conversation, at length, just the week before...where she literally said my child was "socially akward." 

{We know}.  I'll post more on this later.

AJ's repeatedly taking of his coils.  All the time.  It has become a huge problem, and by the end of our day has tested all of our patience.  That's all I'll say at this point.Well, this weekend he didn't do it as much, so I guess I will say that. We saw his audiologist at the end of February and were again, not able to get an audiogram.  We'll try again in a few weeks. 

AJ weighed in at 27lbs at the neurology office, which was super exciting.  He's fitting into 4T pajamas, 2T and some 3T pants (rolled), and 3T shirts.  We haven't seen GI for almost a year and I'm starting to wonder what they'll say when we go in May.  AJ needs to take a complete vitamin and I cannot get him to take them, AT ALL.  Note: The gummie vitamins are NOT complete vitamins.  I have crushed with a pill crusher, crushed it to smithereens with a mortar and pestle, mixed it into yogurt...and he KNOWS.  He just knows.  Sigh.  I will keep trying, but until we are on regular regimen of vitamins, we continue to give him the supplemental drink- Kid Essentials.  He's eating, he's growing, and that's all we can ask for....

I can't think of anything else at the moment!

Tuesday, March 1, 2011

The F-Word

I decided to finally post this...because as with most things in our life that have to do with AJ-ignoring it won't make it go away.

Ellen, one of my favorite bloggers (and whom I frequently link to) wrote this post a few months ago. She kindly gave me permission to borrow her post.

The "f" word in my life is AJ's future; it's not something I talk about a lot. On purpose. Looking that far ahead unsettles me. The more I keep trying to envision what his future might be like, the more anxious and depressed I get. For the most part, I've set my sights on the present of AJ and what he is doing, rather than what he might do someday. It's been a good thing for both of us. A healthy thing.

I don't have my head buried in the sand. We have already determined guardians for AJ and continue to work on other logistics of his future. But the thought of AJ in a home for the disabled? It makes me cry. I am tearing up as I type this, and I've had to stop a couple of times. My mind goes to bad places when I think of it.

AJ in need of a special home?

AJ without me and Jeremy?

How could we do that to him?

Who would protect him and take care of him like we do?

No, he could never go to a home.

But what if it were the right thing for him? He'll need to be independent.

Would he be able to change his clothes himself or would there be someone to help him?

GULP. How will he communicate his wants and needs?

What kind of friends would he have?

What do those homes look like on the inside, anyway?

What kind of job would he get?

How could I not kiss him every day?

How often would we visit?

And so on and so on. My mind spirals off into all sorts of irrational thoughts. And I know they are mostly irrational, given the fact that AJ is four and a half years old and still has lots of growing to do and progress to achieve.

There is a home for adults with disabilities near a store I frequent while AJ is in school. A group of residents would come in sometimes; a mix of adults with mental disabilities. I'd spy on them the entire time as I'd walk the aisles, watching them talk, laugh and enjoy themselves, while shopping with the help of their aide. I felt glad for them.

A few days after I read Ellen's post, I was at the store. And so was the group of residents. As they were checking out, I literally hid in the back of the store. Bawling. Thinking about Ellen's post...about AJ's future. Picturing AJ as one of them.

The truth is, I'm not yet at the special-parent developmental stage where I can think of this. It's still too painful. And yet, what's helped me help AJ is researching things that could benefit him. While we celebrate each and every one of AJ's small successes and moments, the fear of the future is never far away.  My child cannot communicate-effectively-to anyone-what he needs or wants. THAT, is scary as hell. While we jokingly refer to one of AJ's PT goals as sitting on a bar stool with his friends in college, I wonder whether or not he'll be in college. 

The constant back and forth is what drives this fear of the future.  I have digested and accepted that my son is Deaf and has Cerebral Palsy.  It has been years since that was introduced to my brain.  But AJ's recipe for life? Its FULL of ingredients. That seemed to be optional (even non-existent) in the beginning.  He has this, oh now this, and well, this.  Adjust. Readjust. Adjust again. Repeat. All of it makes me want to get off the merry-go-round and puke every now and again.  It never seems to stop. All of these ingredients make constant changes to his future. 

And for someone to say, "Oh, he'll be fine."  You don't know that.   No one knows that.  Fine is not, and never will be a word in my vocabulary.  Because AJ deserves more than FINE.  I want him to have an extraordinary future, not just a "fine" one.

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