Big Man on Campus

Goodbye 1st Grade...Hello 2nd Grade.

What the WHAT?!

IF you haven’t heard…

We are adopting…again!

We had gone around and around as to how to share our news.  T-shirts? A t-shirt for AJ?  A video? And then I thought-why not have AJ announce his own big brother status?! AJ tapped his iPad to play his exciting message for his grandparents. They were speechless.  AJ promptly touched the screen on his iPad to repeat the message. Smart.kid.

After we shared with our parents, I posted a video of AJ on Facebook to make our new public.

We were and still overwhelmed with the incredible amount of love and support for our family!!!!

Slowly, questions have started.  So, without further delay, here is a little Q &A.

Where are you adopting from?
Bulgaria

Where the heck is that?!
LOL!  Bulgaria is surrounded by Romania, Serbia, a small bit of Macedonia, Greece (squeee!), and Turkey.

image

What agency are you using?

We are using two agencies.  The first is called our homestudy agency.  They are local.  The second is called our placement agency.  This is the agency that actually has an adoption program in Bulgaria.

Homestudy Agency: Special Children, Inc.  Brookfield, Wisconsin
Placement Agency: All God’s Children International Portland, Oregon

Where are you in the process and Why Bulgaria?!
Sit down and buckle up.  Unofficially we’ve been in the process for about two months.  When we chose our placement agency, we originally had every intention of adopting from the Philippines.  When we sent in our preliminary application, red flags went up right away.  Jeremy’s medical diagnoses (Multiple Sclerosis and Diabetes) were cause for concern.  We had to obtain written letters from each of Jeremy’s physicians (three to be exact) answering each question meticulously on the agencies requirement outline.   Jeremy also had to write a letter answering the same questions.  The letter ended up being four pages long and we held our breath after I dropped that sucker in the mailbox.

Yes, that is really my hand and the real letter. Yes, the lady behind me thought I was a whackadoodle taking a picture.

Jeremy’s providers were outstanding in their response time and slowly I began to receive emails from our agency stating one letter had arrived…then another…then another.  I received a call from the agency explaining that the social work department had advised us not to go with the Philippines due to Jeremy’s health issues.  The concern was that we would get all the way through the dossier process (big packet of paper that goes to the child’s country and is basically like your resume to be an adoptive parent) and they would withhold a placement.  It was too much of a risk.  Several other countries were out due to Jer’s diagnoses.  It wasn’t long before Bulgaria was staring us in the face.

Then it was time to fill out the financial worksheet.  We did so, and got the “you pre-qualify”- send in your formal application for Bulgaria.  WAHOO!

In the meantime, we met and chatted with several families and friends who have foster children, foster to adopt children, and children adopted domestically.  We prayed, and prayed, and prayed.  I worried.  We talked, and talked, and talked.  I felt like God was constantly changing the game.  Or was the game just changing and God was leading us and we just didn’t see it? 

Just as we were in the midst of feeling like we didn’t know what to do, two things happened:

We received the pre-qualification from the agency.

and

A friend sent me an amazing daily devotion that had adoption written.all.over.it.  It came at the perfect time.  Of course it did-God’s timing is perfect.

I used a portion of it in our announcement below:

The path through life can be dark and confusing; it can be difficult and at times unsettling to move forward with the lantern of God’s guidance shining only a step or two ahead of us. We want to know more, we want to see what lies ahead, and we want a guarantee of success.

Our worries and fears of the unknown, however, do not in any way diminish or deter our sovereign, omniscient Lord. Instead, He desires that each of us step forward in faith. He has promised that when we do so, He will provide us with the guidance we long for (Isaiah 30:21).

We are being called to move forward by faith, and are calling upon the Lord of Abraham, Moses, and David. He strengthened each of them, and He’ll surely strengthen us.

There’s your sign.

Our homestudy agency is the same agency we used with AJ.  That is, the same homestudy agency.  We are working with the same social worker-who is over.the.moon excited to see and work with us again.  It feels so good knowing how this process works and knowing we are working with the same agency and case worker!  It is no coincidence that Special Children is listed as an approved agency on All God’s Children’s website.  Nope, not at all.

We are ready. So ready.  AJ is ready. 

Initially, Bulgaria was not high on my list of favorite countries.  It started with Brazil, then Philippines, then foster, then foster to adopt, then fill in the blank...you get the picture. 

Initially, our main criteria in looking at countries was the travel distance, time, and required trips.  Brazil required almost a two month stay for both parents.  Errr (that’s a buzzer noise).  Try again. China was a no because of Jer’s MS.  Errrr.  Try again.  Philippines?  Too new of a program.  Errrrr. Try again.

Bulgaria requires two trips.  My mama heart no likey.  It is no secret that I was a complete basketcase when we visited AJ the first time and had to give him back to the orphanage after just 20 short hours with him.  So I immediately put up my defense barrier and said no-broken-heart-for-us.

God had other plans.

As we were talking with local families, I also reached out and emailed every.single.family on the reference sheet All God’s Children provided us for Bulgaria.  I received wonderful responses.  Detailed responses (wahoo!) and answers to every question we had.  Honest, raw, in-depth answers from parents who have adopted from Bulgaria. 

I began to understand the process and reasoning behind the first trip/visit in a whole new light. 

So, Bulgaria it is.

We are still early in the process, beginning our homestudy requirements and waiting on a big ‘ol honkin’ packet from our placement agency.

Isn’t adoption expensive?

Is that a trick question?  This question hasn’t come up yet, but we know it will.  Yes, adoption is expensive.  Insanely.  But worth.every.penny.  Have you met AJ?  We are putting our faith in God to provide.  And we know he will.  Because he did with AJ. We plan to fundraise our little patooties off to bring this child home.  Whoever he or she is she is already worth it!  And in the spirit of the message at church today-we will sacrifice to bring this child home.  Stay tuned…

How did you know you wanted to adopt again?

About a year after AJ came home, we received news that his little brother had been taken to the same orphanage where AJ lived in Guatemala.  Adoptions were closed,  but we still fought to find a way to adopt him and if not adopt him-support him in-country.  Nothing ever happened, but we were quick with desire to bring his brother home.

AJ’s needs intensified and life was crazy.  Don’t get me wrong, it still gets crazzzzzy, but things are so much different now that he is older.  Adoption began to creep up in my heart again about a year ago.  Jeremy did not feel the same.  It was a scary thought to do.this.again.  What would happen?  What would we do?  What if, what if, what if?  I think we what if’ed until we were blue in the face.  We scared ourselves right out of it. 

But it kept tugging at my heart.  Last summer I was blessed to meet some fabulous ladies through a women’s bible study group.  A few of these ladies have become fierce friends and know my heart and its longing to adopt.  It is with these women that I found my healing after five years of fighting the reality that was life with a special needs child.  These women helped me LET.GO. 

One of our group members was in the process of international adoption.  Soon after our summer session ended, I began to see “Foster Parents Needed” signs on every.freaking.corner.  Seriously.  It began to weigh on me.  But Jeremy did not feel the same.  I let it go and decided, when the time was right, we’d know.

And then, on a sunny day in March, I attended a one-day women’s conference with a few ladies from church.  We were listening to the author who had written the women’s study we had done last summer.

  She began sharing her “Anything” story, in which she showed a clip of her son’s Gotcha Day in Africa.  Our entire row was sobbing.  I just knew it was our time.

I sent a quick text message to Jeremy during our break…”JA just shared her gotcha day video-AJ needs a brother or sister!” 

Even though we weren’t on the same page, my man still loved me and listened to my feelings.  He still loves me and listens to my feelings.  That’s a good thing, right?

The last portion of the conference involved each of us writing our “Anything” for God on a card.  The cards were hung on cables that strung across the church.  It was beautiful.

 My anything was:  God, show me what you want for our family.  Whatever it is, your anything, I will do it.

That meant accepting it if it wasn’t meant to be.  That meant honoring and loving my husband and his feelings.

That.meant.a.lot.of.things. 

I came home and shared the adoption story briefly with Jer and my in-laws.  This was a cool experience and that was that, I thought.

The next morning, Jeremy woke up, turned to me and said, “I think we should adopt.”

And the rest is history, friends.

Buckle up.  Here.we.goooooooooooo!

Surprises

Dear Mommy,

I really enjoyed our time together on Friday.   I love it when you swing me higher..and higher…and higher.  Can you tell?  My smile and giggles are all for you, Mommy.

I’m sorry I made you cry almost all day long.  I’m finding myself, Mommy.  I really am.  Isn’t it cool?

I know you were crying tears of joy and pride, but I still hate to see my Mommy cry.

Yes, I carried that big blue ball across the yard with both my hands.  Yes, I walked while carrying that big blue ball.  I know you cried.  It’s ok Mommy, really.

Yes, I hung from the rings on the swing set and giggled when you thought I was holding myself up when in reality, my feet were on the ground.  I am taller and stronger, Mommy.  Isn’t it cool?

Yes, I handed you my cup and my bowl when I wanted breakfast, and waited patiently for my waffles and eggs.  I am learning patience Mommy.

When you said “Stop!” as I was running down the driveway…  I stopped Mommy, I stopped.  Are you proud of me?!

Mommy, I have friends!  I have lots of friends.  Isn’t that cool?!

I’ve learned a lot of new signs, Mommy.  Isn’t that cool?!  I love being able to communicate with you. 

Have you noticed that I am less frustrated and less aggressive?  I love it.  And I know you love it, Mommy.

Mommy, thanks for the iPad.  Best.gift.ever.  I love having a way to tell you what I am thinking or feeling.  Isn’t that cool?

Thank you for swinging me every morning.  My body feels so much better when I get to swing before school. 

Did you see me turn and walk out the gate when I heard the sound of the gate opening?  Isn’t that cool?

I know you see me when you call my name and I stop when I hear you call me.  I love that you call my name, Mommy.  It makes me smile and giggle.

Mommy, have you noticed I’m Mr. Independent.  Thank you for fostering that independence.

I love seeing your happy face every morning when you come in my room.  Do you love seeing my face too, Mommy?  I think you do.  You tell me I’m the most handsomest boy ever every.single.morning.

I'm full of surprises, Mommy.  This is only the beginning. Are you ready?

Mommy, I love you.  And I’m proud of me.

Me too buddy, me too.

Perfect

Shortly after I was born, my mom took me to the doctor.  All routine.  Until he held me up naked and announced to my mom that my hips were out of alignment.  And see this here, her foot turns in.  She’s going to need casts.

I’m pretty sure that is not what my mom expected to hear.  My hips straightened out on their own, but I had several different casts over the course of the next year.  I had corrective shoes that I received as gifts for Christmas, Easter and my birthday.  They were expensive. The shoes looked like I had the wrong shoes on my feet, as in the left on the right and vice versa.  Regardless, my mom did what she had to do.

Jeremy was diagnosed with diabetes at age 10.  His mom rushed him to the ER immediately, recognizing the signs of diabetes.  He was drinking juice like it was going out of style.  She did what she had to do.

I am Type A, while Jeremy is so not.  We both think we are right all the time.  I have OCD tendencies with certain things.  Jeremy is not a fan of organization.  We do things very differently. 

Jeremy has a messed up thyroid.  I constantly battle my weight.  Jeremy has MS.  I spent years in therapy trying to muddle through special needs motherhood. 

My point?

We are not perfect.

None of us are.

So why, oh why, do we live in a world where perfection is the unachievable goal of the human experience?

When you enter the world of adoption, buzz words start flying around.  Special needs, waiting children, medical needs, healthy, etc.  I cannot fathom why we celebrate when a healthy child is chosen, but questions, shock, and surprise follow the choosing of a child with needs.

This post came to mind during a conversation with my mom.  Someone had asked her if we said we were open to special needs when we adopted AJ.  The answer: No.  You get this checklist, which reminds me of a grocery list.  All of the conditions listed, and you pick what you would consider accepting.  We did not list any special needs, other than what was required to be accepted for Guatemalan adoption.  Low birth weight, prematurity, and lack of prenatal care were all required to be accepted as they are very, very common in Guatemala. 

AJ fit all of those criteria…ah hum, and then some. 

When a child with special needs is born to a family in the traditional way, I have heard (since I have not experienced it) that grief is obviously felt.  However, the flight or fight instinct kicks in and you move forward.  You still love that child! 

So why is it so surprising when someone chooses a child with special needs?  There are no guarantees in the world of parenting. This I can testify.  Foolishly, we had just assumed that because we specified “this” type of child, that’s the type of child we would get.  God laughed.  And we are so grateful he did.

When a loved one is diagnosed with cancer, or a lifelong chronic disease, we do not throw them on the curb. When your child is diagnosed with autism or a syndrome or anything life-changing, you do what you have to do and move forward.  So why is that the first instinct when it comes to a special needs child to throw the idea to the curb?  “Oh, you don’t want to adopt those children because they are so damaged”.

What if that was you?

What if you were damaged at 3 or 7 or 12 years old?  What would you want your parents “to do with you”?  I think perspective plays a key part in that. We put up this perfection barrier-where anything that doesn't fit the perfection mold is meticulously scrutinized and judged.

While my and Jeremy’s examples are minor to us, to some they aren't.  My mom could have ignored the doctor and who knows how I’d be walking now.  Jeremy’s mom could have ignored the signs of Jeremy’s diabetes and, well.  That would have just been bad.

None of us are perfect. 

She Said It...Again.

Earlier this week I took AJ to see his physical therapist. You know, the one I schmooze all over this entire blog?  The one who discharged AJ a year ago and said, “He doesn’t need me”... 

Well, she said it…again.

I took him in for a functional screen, which functions as a quick peek at AJ to see how he looks, feels, and moves. Translation: Mommy needed confirmation that's doing just fine without therapy.  Flying solo freaks me out sometimes.

We haven’t been to his therapy clinic in a year and he still knew exactly where he was going.  Upon entering the gym, he promptly pulled out the platform swing from under one of the mat tables.  The difference, when his PT said, “No, sorry bud, we don’t have time today…he moved on to other things”.  My.big.boy.  
She was simultaneously thrilled and saddened with his status.  Thrilled because, he.looks.great.  Saddened because that means she doesn’t get to see/treat him. 

We discussed the idea of a therapy/service dog for AJ, which is something Jeremy and I have been considering for quite some time.  If anyone was going to give it to me straight, its going to be his PT. 

While I was concerned about his spine, she reassured me that his functional scoliosis has not returned.  His back looks straight.  He.looks.great.

The one issue we both agreed on, his left foot/leg.  Oh boy.  Child, child, child.  The Botox is not lasting long enough.  We are researching phenol injections, you can read about them here.  They last longer, as in 6 months, but there is a catch.  At least for AJ.  You have to be under for the 15-20 minute procedure.  AJ and anesthesia are not friends.  And, he can’t have the stuff that puts you out for just a little bit.  Oy vey.  So, we’ll be digging into that a little bit more in combination with his PT and his physical medicine doctor. 

Botox is still a great option, except that insurance only covers it every 3 months.  AJ’s wore off I’d say in 4-6 weeks this last round.  And that was 4, count ‘em, FOUR injections.  Lots to talk about and discuss. 

She also recommended that we have his stop wearing his AFO on that foot.  Hallelujah.  He’s been walking worse with it on than without.  I’ve been taping his foot and hip with kinescio tape, which has helped tremendously.  Now, if I could just get AJ to stop pulling off the foot tape.  Dude, the stuff is $24 bucks a roll.  We’ll get there.  He giggles when I pull the tape out and stands perfectly straight for me while I apply it to his hip, and somehow relaxes his foot enough for me to tape from the in-step around to the outside ankle.  It could be worse.  He’s such a trooper.

We’re also going to bring out the ‘ol night splint again.  We’re only going to come in on the splint about 5 degrees, so he can stretch out those muscles. 

“He doesn’t need me”. 

Five years of therapy after therapy after therapy and he’s finally free AND thriving.

WAHOO!

Removing the "I"

Easy.  You know, it’s that word that everyone says in phrases. 

I wish ____ was easier.

I just wish it was easy.
Why can’t it be easy.
It was so easy for so-and-so. 

I think it is human nature for us not just desire, but take the easy route.  To want the easy route.  Humans-well, let’s face it.  We are sorta lazy.  Most of us do not need to hunt and kill our food.  We’ve got comfortable places to call home and lay our heads to sleep.  We’ve got the easy.  But yet, we always want it easier.

A friend and I were recently having a conversation when she shared that she would like things to be easier for me.  Bless.her.heart. If you would have asked me a few years ago, I would have jumped all over that.  Yep, I want it to be easier too. 

But that is not my answer today. 

The conversation was in regards to AJ being non-verbal.  I am not going to lie-it is difficult.  It was and has been tremendously difficult.

But it is my normal. 

Sidebar: What in blue blazes is normal anyways?!

In a broad definition, it is my easy.  Because it is what I know.  I don’t know any different.  I know my story, my family’s story, my son’s story.  Those are normal stories to me.  I am less judgmental of other’s easy. 

AJ has and is making tremendous strides with his communication.  As in, every day in the last week he’s made my jaw drop to the ground with something new and exciting.  I mean seriously kiddo.  Rockstar.  Did it sadden me AJ wasn’t talking?  Yes.  Deeply.  Does it sadden me AJ isn’t talking?  Yes.  Sometimes. 

But who am I to say that AJ speaking would make life 100% easier and better.  His life or my life? Life is pretty good with AJ making progress in his communication.  He has what I call a knuckle sandwich of language.  Lack of language exposure early in life, hearing loss, speech & language delay, apraxia.  Basically, it’s a big hoagie of obstacles.  But, AJ can totally overcome it.  In his way.  I think it is often difficult for those looking in to understand that AJ has many, many challenges before him.  When one area soars, another falters.  That’s just the name of the game.  And you plug along.

It took a really long time to remove the “I” from AJ.  Meaning, what I wanted for him. My plan.  My way.  My convenience.  My wants. We wanted to give him the very best life possible.  He didn’t argue. When we said, you’re going to do this, this, this and this because we want you to… He countered with, here’s how this going to go.  Jeremy wanted a child who played sports.  Lots of sports.  He wanted an ESPN buddy and Brew Crew cheering mate.  I thought I didn’t want much.  Just the mom experience with a healthy child so I could follow everyone else’s lead and do the normal mom things.  AJ challenged both of us.  Our dreams were not shattered, they were simply altered.

It was not, by any means easy to let go of our own selfish wants and desires.  But, its not about us.  It’s about AJ.  Looking back, spending summers in therapy appointments yielded no outside therapy for my almost 7 year old.  Spending hours and hours putting his implants back on and encouraging him to listen and enjoy the world around him yielded a very inquisitive little boy who plays with his ability to hear and takes his coils off when he wants to ignore me, just like any other implanted kiddo.  Caving in and moving forward with PECS has lead to AJ navigating the iPad on his own, making choices, increased vocalizations, and clear communication.  Waiting for him to naturally fall into loving sports is happening before our very eyes.

“I” really can’t ask for much more.  Right this second, I’m ok with AJ not talking.  Because he speaks in so many other ways.  And functional ways.  Would I love (beyond the moon love) to hear his sweet voice?  Absolutely.  But for now, he tells me things in his way.  Just because he isn’t talking now doesn’t mean I think he never will.  It doesn’t mean we stop working on speech. It doesn’t mean we stop working on anything. But, I hear his vocalizations changing.  He’s getting closer.  And we’ll keep adjusting to the new normal as needed. 

We’ll just keep the “I” at bay.

Intentional Success

AJ's IEP was this past week.  It was the BEST.IEP.EVER. It was also the fastest, coming in at 2 hours exactly.  I've mentioned before that this year has been incredible for AJ as far as school is concerned.  He has made so many gains.... I'm bursting with pride just thinking about it.

Here are the highlights:

AJ has taken to his iPad with a force to be reckoned with.  He is able to turn it on, swipe the screen, choose his iCommunicate communication app, or his sensory app board.  He knows the home button will return him to the home screen.  He exercises this skill a little too much.   He chooses from his "Basic Needs" board with great success.  He knows his picture schedules very, very well.  This has been key this year.  For example, his Monday board has one picture at a time, where he swipes to see what's next.  What is amazing is that we have decreased the number of pictures quite a bit.  At the beginning of the year his school day boards all started the same: picture of his school, followed by his assistant, the hallway, the elevator, another hallway, the entry to a specific room, and the room itself.  Now, his school day boards start this way: picture of his school, his assistant, the room that is his destination.  A goal for app use was established as well, since AJ likes to flip through apps like he's a fish.  At his IEP it was discussed that while it drives us all batty sometimes, we think its AJ enjoying the "power" of being able to control the iPad and flip to whatever he wants.  He's such a smart kid.

The most awesome iPad related gain?  AJ is spontaneously seeking out his iPad to try and tell us what he wants.  HUGE!!!  He's understanding that in some situations he's not getting his point across.  So instead of throwing a tantrum and getting uber frustrated, he's using his communicate tool-independently.  The first time he did it at home Jer and I about jumped out of our seats!

AJ is matching pictures to pictures in a board book.  We are beginning to expand this. He is able to trace the letters of his name.  He can trace a vertical and a horizontal line.  He can cut a piece of paper independently using a tabletop scissors.  He loves to cut things out.  This is quite a change from earlier in the year and even last year.  Our goal is to have him engage his left hand/arm to move the paper himself instead of an adult guiding the paper.  AJ is coloring (wahoo!) with great success.  He doesn't do well with just a blank sheet of paper, but does well with a target, such as a coloring sheet or a shape drawn on the paper.  This is HUGE, as he has never been one for coloring.

AJ is doing puzzles with success!  His special education teacher came up with the great idea to color the puzzles piece inserts black to give AJ a color different between the wood puzzle board and the inserts.  It's worked really, really well.

Each year his school PT times him walking the same distance in one particular area of his school.  This year, he dropped his time by 24 seconds.  He's getting faster!  He's also participating like a champ in SDPE (Specially Designed Physical Education).  He's open to anything they throw at him (pun intended).  For example, at the beginning of the year, he was reluctant to try new things.  Now, he'll explore it and pays much more attention to the environment and kids around him.  He is actively participating.  Seriously.  I'm bursty.

A few weeks ago a taekwando school came into the gym classes and worked with the kids.  Apparently, AJ was all.about.it.  He "got it" from the get-go.  They were holding their hands a couple feet off the ground and he was kicking all on his own.  You better believe we're checking into this for him!!!  His school OT is really working on his pre-writing skills and his fine-motor skills.  He has come so far and is open and willing to pretty much anything she presents to him.  She's also really good at finding things that she knows AJ will like.

AJ has become more and more vocal.  His vocal play and imitation has sky-rocketed and we are honoring every sound and encouraging him as much as we can to keep it up!  He's also doing this at school, which is super exciting to see him doing it in both environments. He's keeping both his implants on during auditory therapy, which is HUMUNGO!  Yes I made that word up.  He still prefers the right, but we are making some great progress with returning to bilateral.  I would say 5% of the time he'll "fight" and not want the left on.  That's only 5%.  He's been putting on his own coils for quite a while now (wahoo!), but now he's trying with the left exclusively.  It is amazing to see him "playing around" with his implants.  He takes the coils off and on, realizing the difference between when they are on and off.  He's no longer ripping his implants off or chewing them.  Hallelujah.  Seriously.

We have a follow-up this week at his CI Clinic-as he's been implanted for 4 yrs on the right.  I don't know how that happened.  I'm looking forward to him showing his audis his amazing progress.  And for the first time ever, I am not stressed about booth testing.

AJ needs a brother or sister.  Oh, wait.  That wasn't in the IEP ;)  But its what I was thinking during the peer portion of our meeting.  AJ learns best when he instruction is 1:1 and he has 2:1 assistance.  Meaning, the teacher, and his assistant helping/modeling/prompting him.  However, there has been a huge shift in his interaction with his peers.  As in, its exploded!  He loves to be around his peers. He's seeking them out.  He's getting better at acknowledging them with a high-five.  This is the blanket action we all do to greet him.  He's really good at doing it with adults, but he needs a bit of prompting to do it with his little friends.

AJ's regular education teacher sat in on AJ's entire IEP.  I wanted to squeeze her.  AJ is rarely in his classroom, so I was unsure what she would have to say.  But she opened my eyes to the magic of my little boy.  AJ has a desk in her room-he has all year.  I took a picture of it at the beginning of the year in awe that my boy was a first grader.  With a desk.  Sigh.  Anyhow, she shared that even though AJ isn't in the classroom, the kids have NOT forgotten about him.  She hears conversations between the kids, "Did you see AJ today?!", "I saw AJ on the way to lunch"!  I just about fainted from the cuteness and kindness of these children.  They look forward to seeing him and guard his desk, saying, "That's AJ's desk".  I just.  We could not have asked for a better school environment.  He went to hug one of the preschool girls the other day.  I just about died from the sweetness.  They are his little army love.  I love it.

AJ's been involved in a peer social group for the last few months with some of his male buddies.  They all just radiate cuteness.  This has really helped him make eye contact with his peers, engage, and learn social skills.  It has transferred into other areas, such as engaging his peers throughout his school day.  Currently, AJ eats lunch in the special education room with a few of his friends.  The goal for next year will be to start him in that environment again (for consistency) and then transition him back into the lunchroom with all of his peers.  Apparently, his friends have asked to have him back at lunch with them.  We miss him!  Tear.  At his CI follow-up well be figuring out if we can map a specific program for the lunchroom environment so that he can be with all his peers.  It is now appropriate for AJ to be with his friends on a more consistent basis.

He's bored here at home.  Often.  I am not as fun as a squealing 7 year old girl, apparently.  Or his other buddies.  I am hoping to set up a playgroup with his buddies over the summer.

Speaking of summer-another shocking revelation at his IEP.  AJ only qualified for auditory services with ESY this year.  Holy buckets.  I had to have the staff clarify about three times to really grasp this concept.  Our school district offers regular summer school-what I call fun summer school-which AJ will be participating in.  They have a special needs component which will allow us to sign him up for some fun sessions.  His auditory will be built into that time. I am so excited I can hardly stand it.  No more summer ESY with him and a teacher in a room.  He'll be with other kiddos.  None of this was appropriate last summer, nor in years past.  He wasn't ready.  But boy oh boy is he ready now.  To know that the only area they see regression possible in is auditory, that means my little boy is being successful.

Another goal for AJ is to attend to books for a certain period of time.  Often, AJ flips through books like he flips through apps on his iPad.  It's not that he doesn't like books, because he does, but its a crapshoot as to whether or not he'll attend or not.  Some days he's really "on", some days he's "not".

A few months ago I attended a seminar called "Lights, Camera, Autism".  It was awesome.  And not just for autism. I learned a lot about how to use technology to help AJ.  I was proud to realize we were already ahead of the game!  One piece that I really took away was that the structured "frame" of an iPad (or other screened device) really helps frame and concentrate his brain.  His school SLP asked me for videos of each of us waving and saying "Hi to AJ".  From that format, AJ has learned to sign "Mommy", "Daddy", and "dog".  Yeah. Pretty incredible.  Just this week he produced the modified sign we created for him for "all done" (tapping his hands on the table or his lap).  Yesterday he mastered "bath".  Next up- "sleep" and "cat".  He loves the videos of our dog and cat that I took.  The dog barks, the cat meows up a storm.  He squeals with delight when he sees those videos at school during speech time.  I've noticed him reacting differently to the dog and cat here at home as well.  He's more aware, seeks them out, and pets them.  Framing his world has been very, very successful.

If you are interested in learning about using technology to help your kiddo, check out the Lights, Camera Autism book.

The one area that is still grey and often frustrating is AJ's behavior.  We've figured out that he's displaying these behaviors for attention.  And, because he has no other way to express his emotion. When he's super excited his he'll scratch and pull hair. When he's mad he'll scratch, bite, pinch.  Sigh.  One thing that has helped decrease the behavior is putting words to his actions.  "Oh your mad, I know you are mad!  You.are.mad!".  I'd say that this is helping about 75% of the time.  We'll keep at it.  I'm also brainstorming with his school SLP and OT as to how we can teach him emotions.  I would be ecstatic if we could teach him happy and mad for starters.  AJ doesn't understand those cute/creepy posters with the faces of emotions.  I hope we figure something out soon.

AJ can open and walk out both our front screen door and the back screen door.  He's so independent now. One of his IEP goals is to independently wash his hands.  He's 75% there.  Little skills like this all lead to his successful independence as he gets older.  You wouldn't think it matters, but oh it does.  He can get fully undressed on his own now.  He gets in and out of the car without assistance.  He walks down the stairs without assistance, holding the railing, independently-and is much, much faster.  He understands verbal prompts only, such as: stand up, sit down, pick it up, where's your coat, let's go, stop, get down, I could go on.  Isn't that awesome that I could go on!

The biggest idea we discussed was how AJ is displaying a copious amount of intent.  With everything he does, there is intent behind it.  No longer is he just wandering through his days.  The little boy who wasn't supposed to walk or communicate successfully-IS.  He has expectations, wants, needs, intention, and happiness in his life.  I don't think I could ask for much more than that.

GO AJ!

Raw

Three weeks ago we were sitting in church listening to the second talk in our church's "Suffering: You Are Not Alone" series.  This series was incredible right off the bat.  Let.me.tell.you.  But this particular week was eye opening for me on two levels.

Did you know that we moralize and minimize suffering?  It's all relative, right?  I find myself judgemental when I hear someone else moralizing another's suffering.

Well, at least its not as bad as Jackie's story.  
Or Ken's life.  
Or, hey, did you hear about so-and-so?  Now that's tragic.  

And the minimizing:

There is always someone else worse off than you are.
There are starving children in ________ (unfortunately, there is a choice of countries here).
The chemo's really not that bad.
So you lost your brother.  It's not like you lost your wife or child.
Oh, you'll be fine.

Or my favorite....absolute SILENCE.  If I say nothing, it doesn't exist.  

I sat, mulling over these approaches to suffering, when suddenly our Pastor asked for a show of hands as to how many people have been diagnosed with a terminal or chronic illness.

My.husband.raised.his.hand.

MY HUSBAND.

Not the stranger two pews over. Not Nancy's third husband. Not so-and-so's father.

MY HUSBAND.

I placed my hand on his lap as he raised his hand.  As his hand raised, my tears began to fall.  And fall. And fall. And fall.

{For those of you who are new readers, Jeremy was diagnosed with MS just short of 3 years ago}

I am blessed, beyond belief, to have a stubborn husband.  Without his steadfast stubbornness to kick diabetes and MS in the rear, I think I'd have a wet towel schlepping around this house.  Jeremy does not schlep.  The journey to his diagnosis was a rollercoaster.  A wasted ER visit, countless tests, a spinal tap, IV treatments, failed medications and too many unknowns to count.

I sat, as my husband had a needle shoved in between his spine and awed at his ability to be logical and stay still with all the unknowns before us.  I turned my head to fight my tears.  I drove many miles in tears, praying to God that something would change and that this was not happening. I held his hand and gave him quiet assurance that we would handle whatever was to come.  I answered the doctor's questions when he could not. I watched him attend his son's birthday party, clearly in the clouds, realizing a year later that he wasn't able to remember the event.  I watched him go through two agonizing trials with different medications, both of which had more side effects than positive effects.  I watched his anxiousness before MRI appointments and slightly lose his balance on rough days.  I learned to read his symptoms with him speaking a word.  He downplayed everything to everyone else, but as the other half of this crazy partnership, I knew.

We are so incredibly lucky that his MS is slow-progressing.  His medication is working.  We take things one step at a time and pray.  A lot.  We pray in thankgiving.  We pray in need.  We pray for certainty and guidance.  We pray for blessings.

But in that pew, I was faced with the raw- and it was rawwwwwwwww- reality that my husband has multiple sclerosis.

And there is nothing I can do about it.

Me.  The doer.  The fixer of all things because I am the wife, mother, woman.  This.is.what.we.do. As much as we are blessed and lucky that things are stable, it doesn't take away the bold reality that he has MS.  We're a little spoiled by his success with the disease.  It makes it easy to forget about the disease's possibilities. In that moment, I wanted to curl up next to him in our bed at home and lay for days.  Just.be.  In all of this life's craziness, I wanted to just.be.  And use a wand from Harry Potter to create a bubble charm so that I could protect us from further craziness.

I spent the next few days emotionally exhausted and thankful for the jarring reminder.  I think I truly needed that.  We are living proof that this is doable.  We are thriving in the midst of suffering.  We both give each other a learning curve and do our best to respect each other as we plod through this diagnosis.  I try not to minimize when talking to others.  I try really hard.  I don't know how he feels, physically or how he feels completely on an emotional level.  Men are hard to crack in that department.  I do know that he has shown more strength and grace than anyone I've ever met.  I love him more than I ever could have imagined when we met 16 years ago.  Yeah, I'm all mushy.  Deal with it.

Sometimes we all need to be faced with that raw reality.  Jeremy has chosen to thrive in the midst of his suffering.  I admire him and am proud to call him my husband.  He was bold enough to share his story and the choices he's made in the face of chaos.  You can view his story HERE.
{If you do not want to watch the whole thing, start at the beginning and watch through 6:15 and the second part from 21:15 through 23:00}

“’For my thoughts are not your thoughts, neither are your 

ways my ways,’ declares the Lord. ‘As the heavens are 

higher than the earth, so are my ways higher than your 

ways and my thoughts than your thoughts.’”

Isaiah 55:8-9

Let's Get Physical

You know, this school year has been very, very interesting.  Interesting and full of surprises, causing our family life to become extremely flexible.  AJ has had a rough year thus far physically.  He's doing INCREDIBLE in school-as in this is the best year he's ever had!  Way to go AJ!  But, as we special needs parents know, when one area gains, another area gets jealous, throws a pity party and stomps it's feet.  Well, not really-but you know what I mean.  When one area sees gains something else regresses a bit.

We knew his body would go through a large growth spurt between the ages of 4 and 7.  Oh, that couldn't have been more accurate.  His school schedule this year has him attending 5 hours a day.  His start time, which was moved to a later time in the first place, I know tell people who ask, "He starts at X o'clock, or whenever he wakes up".  I have cancelled, rescheduled, and cancelled again so many appointments, plans with friends, and just plans in general that I've lost count.  And honestly, I'm just used to it.  If you would have talked to me 4 years ago, I would have been angry at myself and the world for something not working out.  But, I've learned that life needs to be flexible, and if I have to cancel, I have to cancel.

He has fallen asleep at school a lot this year.  He's had several seizures cycles, illnesses, and days where he is just too weak to function.  We have had two seizure medication changes already. His sleep his been horrid and without pattern.  If you would have asked me a week ago when the last time was that he slept through the night, I couldn't have told you.  He was so tired, yet couldn't sleep.  This caused him to get bored, and agitated, causing him to continually take his pajama bottoms and pull-up off and pee on his bed.  Several times a night.  Sigh.  

As a parent, I feel helpless.  Because for AJ, growing is NOT fun. Several weeks ago I walked into school to pick him up and was lead to one of his classrooms by his assistant.  He was sitting on the floor and refused to put his coat on.  Anytime we'd try, he'd scream out in pain.  Anytime we tried to have him stand up, he's scream in pain.  Another day, I walked in to find him sitting on the large rug by the school office.  He was in so much pain standing, he wouldn't put his left leg down and bear weight on it.  I've had several chats with his school staff about his aggression.  He has no other way to tell us he's in pain.  

Why so much pain?  Because he has cerebral palsy.  When he grows, his bone grow, but his muscles don't follow as fast because the brain isn't sending the message that they need to stretch.  Insert PAIN.  I'm taking him for botox injections regularly now.  They are supposed to last 3 months, but with AJ's super-hyper metabolism we are seeing it wear off sooner.  He had his last injections (4) in his left leg three weeks ago.  

That weekend he spent an entire two days in bed with high fevers and a wicked cough. Have you met AJ? He's like a superball.  This is rare. I kept him home from school that Monday and even Tuesday.  He felt better on Tuesday, but not well enough to make it through an entire day of school.  I thought we'd take a drive, just to get out of the house.  Well, the botox had kicked in-add that to his general tiredness and he fell face first onto our driveway.  He busted his lip and his top three teeth pretty good.  

We spent three hours in the ER-where they did absolutely nothing-and headed up to see his dentist in the dental clinic.  He has subluxation.  We are now a week out from the incident and still watching his teeth.  He's on a soft foods diet until further notice-which has been interesting to say the least-and those teeth are wiggly.  We're doing our best to avoid infection and tooth death.  I'm thankful they are baby teeth!  Our biggest challenge?  Well, two challenges.  Getting the blasted oral antiseptic on his teeth and limiting his oral stimulation/bite & chew therapy toys.  Really hard to do with a child that gets so much organization from his MOUTH!

Two days later he spiked another fever and his cough was considerable worse, so we headed to the pediatrician.  Viral bronchitis.  Viral won't respond to antibiotics-so, and I quote, "Just let it run its course."

Wonderful.  Thankfully, AJ loves honey, steamy bathrooms, and lots of Vicks.    

This was all last week.  He's feeling better, with his cough just kicking in around dinner time.  We're on Spring Break this week and I'm so thankful we didn't have plans to travel.  Don't get me wrong, I'd love to be somewhere warm, but some down time was definitely needed.  The snow is melted and the sun is shining!     

As much as I am in disbelief AJ will be 7 soon, I'm welcoming that age with open arms for my little guy as far as his body is concerned.  He's such a trooper.  We keep doing the usual regimen, taping his foot and hip, deep tissue massage, vestibular activities, and warm water swimming.  I'm a stubborn mama, fighting to keep him away from surgery.  We can do it!

One

Several month ago I attended an amazing event called Women of Faith.  It was my first time attending, and I wasn't sure what to expect.  While the entire experience as a whole was amazing, there was one particular speaker who suction-cupped my heart from the first word that came out of her mouth.

I listened to a group of women who talked about things like Moses being a basket case.  Then a bench warmer.  Then a bushwhacker.  I learned about Birdbath Bob and his crazy shenanigans.  I learned about how things would change if I just.did.what.I.could.  I listened to the amazing Amy Grant's voice soar over our miseries.  Her album was the first CD I ever bought (OOOHHH) and she's still amazing as ever.

And then, Brenda Warner danced across the stage and began sharing her story.

Have you ever listened to a story and felt your stomach tie up in knots, just knowing the story is about to go south at any moment?  Yep-I was feelin' the knots.

If you haven't heard her story-you should.  Really.  In short, her neuro-typical son suffered brain trauma and became blind after slipping out of  her husband's arms after a bath.  Her story is rooted in so much more than that, but its her story to tell-not mine.  Read her book.  Or find her on the street.  Seriously, you should.

My tears began when she said the well-baby check visit was the only appointment she didn't mind....because that was normal and every other mom was taking their child to that appointment.  She shared her life story and how that changed with certain phone calls, her son's birth, her parents deaths, and her marriage to Kurt Warner.

She went on and the suction on my heart became so tight, I lost it.  As in, an almost visceral reaction.  I.could.not.breathe.  I'm pretty sure I was beginning to hyperventilate while trying (with horrible failure) to hold myself together.  Pfff.  Yeah, you look like a bawling moron because you are just that.  Not that moron part, but the bawling part.  My sweet friends, sitting next to me and in front of me, offered hands and squeezes of comfort and love-which made me cry even harder.  This journey has been hard, and it is rare for me to have, much less be forced, to meddle in its rawness.

Her son is now grown and lives in a group home, on his own.  And is thriving.  How do I know?  Because she brought him out at the end of her story.  She bragged on him and shared his amazing personality and sense of humor.  Most of all, his perspective to and for life was refreshing.  He lived.  He thrived. He had a future.  She did it.  Through all the struggle, heartache, crappy phone calls, and her journey with trusting God, she.did.it.

At some point, I felt myself shaking and ran for the bathroom.  You know, whoever decided it was a good idea to put thousands of emotion women in an area with stairs in the dark was just not thinking!  After I did some forced deep breathing and tried to focus my attention on the writing contest poster attached to the stall door, I walked back through the concourse to my section.  Two friends stopped me just outside and said, "You have to come and see this, Zach (Brenda's son) is singing with Amy Grant.  I stopped dead in my tracks.  The voice of a modern Joni Mitchell and this amazing young man were too much.  I stood with them for a few minutes on the platform to our section, choking back more tears and fighting that visceral feeling again.

I've thought of Brenda a lot since then.  I bought her book, but I prefer her personal delivery much more.  Raising AJ has been a constant flight or fight choice.  I've always chosen fight.  Doing so numbs you a bit.  You just do.  And process your emotions later.  Sometimes they creep in, like in the heat of the moment, but the flight kicks in and the emotions are tucked away again. Listening to Brenda's story forced me into a place I don't go.  Really, I don't.  What better place to dig in than in the middle of thousands of women.  Fantastic. Honestly, I didn't care, but now that I think about it, its humorous.

Sometimes I find it hard to relate to other mothers.  Ok, a lot of times.  Gone is the jealousy, bitterness, and anger toward them for their normal-or whatever I assumed their/normal in general to be.  Here was this complete stranger, hundreds of feet away from me and she's got a suction cup on my heart.  I kept nodding and bawling, nodding and bawling.  She got it.  She got me.  She got the struggle.  She got the triumph.  She got the joy.  She got the humbleness. She.got.it.all.

Today, I was sitting in the neurologist's office with AJ as the nurse was asking me the questions she asks me each time were there.  I stopped dead in my tracks with her last question.  Any other specialists?  I had no answer.  I ran through my mental Rolodex of "AJ Providers" and nothing came up.  I said, "No.  Just you."

One.

Suddenly, having a pediatrician and just the neurologist added to the mix made me feel like every other mom on the planet.  I felt liberated and ecstatic for my little boy.  Oh wait, there is another!  The dentist.  Oh wait! He's normal too!!! We are down to one.  One extra.  And you know what?  One extra is just like that well-baby check visit.  I didn't mind.

I hope one day to meet Brenda.  In fact, I imagine us having lunch, reading our memoirs together, and crying together.  Sappy I know.  But not everyone has the ability to suction cup a heart.  At least not mine.