Eight Years

The first morning of preschool wrecked me. His adoption and homecoming had only been 23 months earlier. That may seem like a lifetime to some, but to me it flew. Three weeks after he came home my calendar exploded into a slew of appointments every week. His diagnoses came, as did the visceral effort to give him everything he needed. It was like a run away festival ride and I was hanging on for dear life. He needed so much and we were moving at warp speed. I giggle at myself as back then he only held cerebral palsy, failure to thrive, and deafness as his diagnoses.

We lived in a different school district and had done extensive research as to what AJ would need. We decided to advocate for AJ to go to a different school in a different district. The other school had a preschool program with kids with hearing loss who were choosing  to hear via technology (cochlear implants or hearing aides) and use spoken language.

We walked into his first IEP meeting with binders for each of the thirteen people present.. We had been encouraged to make a pamphlet or information packet about AJ so that staff would know who we were having this IEP for, That meeting rocked us to our core. It went on for hours without any resolve. The meeting was a bit more stressed then a typical first IEP as we came out swinging for him him to go somewhere else. Our home district did not understand hearing loss or what AJ needed. It was our first taste of truly fighting for what AJ needed. Looking back, I'm glad we walked into that initial fire. The experience taught us well.

After two more rounds of meetings AJ was approved to attend this preschool program for DHH (deaf hard of hearing) students. We walked him into the classroom on the first day and he settled in. Looking back, he was just a baby. He was wearing infant clothes and much smaller than his peers. MUCH. He had just had his first cochlear implant activated four months earlier. He had only been hearing for four months. He had just started walking a few months earlier.

First Day of Preschool

I walked out of the building and walked to my car. Sobbing. A full on sob that nothing will stop and that a hug would have made worse. One of those. I had no idea what to do with myself.

I can't remember what I did that day. His preschool program was only 2.5 hours long, so for the two years he attended that program I stayed in town. I went to the library and wrote, went to Target, and sat in parking lots. The almost hour drive home and back wasn't worth it.  His teachers worked TIRELESSLY to understand him. They brought in every resource they could and gave him the support he needed.

His second year of preschool was a doozie. That fall AJ had a seizure in the car on the way to school and was diagnosed with epilepsy. I remember the morning after clear as a bell. His teacher greeted me at the door, gave me a mommy to mommy hug and asked if there was anything I needed. I, of course, said no. When it comes to AJ, I do what he needs first and process the emotions later. But I have never forgetten her kindess. This was also then year he received his second cochlear implant. His class made cards for him, which his teachers brought to his hospital room when they visited post-surgery. Jeremy was diagnosed with MS a few days before the end of the school year. AJ's staff was incredibly understanding as we navigated tests and appointments and treatments. They encouraged us to attend the zoo field trip in the midst of all this chaos because even though we didn't know we needed it, they did. It gave us great comfort that AJ was being well-cared for. Yes I said well-cared for.

The last day of preschool brought a picnic lunch and playtime at the neighborhood park. His first teacher was leaving that summer and I'll never forget the conversation we had at the picnic table. It was beyond encouraging to our little family

That summer we sold our house and moved into the district AJ was attending. We wanted to keep him enrolled there, but our home district wanted AJ to attend kindergarten in our home district. I don't think so. It was not rare for families to move into this district for this DHH program. It is beyond cool to see these kiddos grow up together and see sprinkles of cochlear implants in each grade level. I was terrified of how he'd do with the move, and as he usually does, he surprised us and handled it like a champ.

Kindergarten

It had become clear throughout AJ's preschool years that AJ was not developing speech. Because of his late access to sound everyone wanted to give him time to catch-up. It was clear something else was at play here. His speech therapist quickly became the master of improv and thinking out of the box when it came to AJ. She was gentle although factual in her delivery when sharing his progress with us. We had started using PECS, which he was very successful using. Over the summer she talked to me about an iPad. She really felt he was ready to take the next step. I was resistant. I felt like this was permanent and sad. Basically I had all the wrong feelings about it.

Because the iPad became AJ's voice.

We were able to obtain an iPad for AJ through funding he qualified for through our county. One morning his speech therapist, kindergarten teacher, and I all sat around a circular table with this iPad. iPads were rather new at that time and his speech therapist was far beyond the teacher and I understanding how it worked. We had also gotten a very expensive communication app for this iPad. We quickly realized it was the wrong choice for AJ and chose a different communication app called iCommunicate. A lot of communication apps use stick figure images and rather cartoon pictures for the images of objects. It became clear right away that AJ responds to real pictures. We took pictures of everything. It's hard for me to remember where we started, because the way AJ communicates with it now blows my mind.

Kindergarten was also the year congitive disability was added to his IEP. This was also the first year that it was difficult for him to spend time in the regular education classroom. He spent most of his time in his DHH teacher's room and then a small amount of time in the special education room. I had an extremely hard time with this. I don't know why. I suppose it is obvious. His kindergarten teacher was gracious to include him in as much as possible.

First Grade

First grade brought welcome changes, a new special education teacher, and programming for AJ. Second grade brought more change and the introduction to a communication method called RPM (Rapid Prompting Method). I remember sitting in the car in front of my mom's condo listening to his teacher tell me she used RPM for the first time and my boy knew his shapes and colors. I sobbed when I hung up.

It's all inside of him, he just can't get it out.

Second Grade

Second grade brought the creation of a resource room. This was an awesome space for sensory exploration. His therapists rocked the path to making that space possible. This was also the year we began using a different communication app for AJ called Go Talk Now. This app was much more user-friendly. In the past we had used more of a picture schedule where he could swipe and see what he was doing next, as well as choose pictures from a glossary of photos, but it really wasn't functional beyond that. This allowed him to make choices and opened the door for multiple layers of boards to be made and expand as his use expanded. It's beyond awesome. Second grade also began the expansion of our family as we began the process of adoption again.

Third Grade

Third grade was by far the worst year we've ever had. I really can't sugarcoat it. The school's direction changed to "full inclusion" and the results were devastating. It was not appropriate for AJ to be in the regular education classroom. Special education classrooms were made obsolete and AJ was isolated without any peers present. It was a cold, windowless room that was given the title "breakout room". With the exception of gym, art, and music, they moved every single environment he was used to to a different room or location in the school. He endured five staff changes that year. His behavior spiraled out of control, he refused to comply at school, and stopped wearing his cochlear implants.

We brought his sister home that December and I still feel a twinge guilty for not realizing what was going on sooner. We consulted AJ's neurologist about his behaviors. He shared that AJ has no executive function (doesn't understand right/wrong or what is safe/unsafe) and also has little to no impulse control. A light bulb went off in our heads. It made so much sense. We sought out a psychologist and were referred to a psychiatrist. We were determined to get to the bottom of what was happening. It is a bit disheartening when a psychiatrist stares at your child and says, "I don't know." By the time we figured all of this out it felt very too little, too late.

Third grade was the year that forever changed me as a special needs parent and advocate. It hardened me a bit. I'm leaving out a lot, but know we fought. Hard.

Fourth grade began with all of the puzzle pieces moved back into the right places. AJ once again had a special education classroom to call home. His lead teacher just understood him and continuously thought outside the box. His RPM use exploded and he was learning! This was the year he learned to jump independently and ride a bike! It was a year of building him back up from the disaster the year before. It was his staff working tirelessly to essentially re-train him to wear his implants at school and calm his behaviors. It was the year of getting him back in the saddle and riding once again.

Fifth grade has been like riding a bike. His team knows him, he knows his team. He knows his classroom, his peers, and his routine. He can tell time and has a reading comprehension of a first grader. This from the boy who was the subject of a conversation with a neurologist who said, "This is about as good as he's going to do in life." Whatever man. You don't know our AJ.

He had surgery this year and his staff has asked all the questions and done all things to support him like a rock star. They don't blink at my ridiculously long emails, updates, and constant information. They are kind and have a smile on their faces when I drop the kids off late because AJ didn't eat, or sleep well, or his body doesn't want to cooperate, or he had seizures. They compliment my outfit even though I forgot to brush my hair and threw on whatever because life with AJ is so different and unhinged. They offer me hugs when I pull up in tears, to which I say no to, because it will make me cry harder. But still they offer. They always tell us we "don't have to do that". We do. They always say, "Let us know if you need anything."

Teacher appreciation week was a few weeks ago and it stopped me in my tracks. Usually I'm one of those that goes above and beyond, because HAVE YOU READ EVERYTHING ABOVE? 

But this year I couldn't think of anything that would come close to our level of gratitude for these people. AJ is not a cookie-cutter student. We are those parents. The ones who are not quiet when fighting for what AJ needs. After all this time, they still like us.

No coffee card, cupcake, or gift is going to accurately convey our love for these people. 

We had AJ's last IEP for elementary school last week and I managed to cry all my tears before and after the meeting. We watched as his staff relayed our son's present levels to his new middle school staff and then turned their thoughts to how they've been with him for eight years, how special he is, and how they would go to the ends of the earth to help our boy.

How do you say thank you for that?

Eight years we've been at the same school. 

AJ has had:

17 teachers

11 aides

1 speech therapist

2 physical therapists

2 occupational therapists

1 gym teacher

2 music teachers

2 art teachers

2 consultants

2 very involved administrators

5 principals

The magnitude of that is staggering. Kids like AJ don't do well with transition, and his performance reflects that. It doesn't mean we don't push him, it doesn't mean we don't stretch him, it doesn't mean we keep things static. But in his world, routine is comfort. I have no idea how he will react to this transition to middle school. He rocked our move, so I know better than to short change him in this department. But a whole new team and a whole new building will be difficult for him. Not everyone understands our son. Thanks to his current team, we are as prepared as possible. 

Big Man on Campus

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

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!

The Motherload of Updates

To My Faithful Readers,

Oh what a summer it has been.  Correction-oh what a spring and summer it has been.  I've had an outline of things to blog about on the inside of my calendar for months-does that count?  Good intentions, always.  Here goes...

April
-During a regular PT session, AJ's physical therapist made the decision to discharge him.  Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis.  "Heidi, you did this on your own.  You don't need me anymore!"  Looking back I am a bit relieved decided this during that session.  I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out.  I've blogged about his PT's awesomeness many times before.  The idea of her not being AJ's PT was completely foreign to me.  I spent the last 10 minutes of his session in complete shock.  That shock continued as we walked to the car.  I closed my door-and bawled.  I just could not believe we were done.  I never saw a tangible end to his physical therapy.  It because part of our life-his PT became part of our family.  It just never occurred me to me, yet here we were.  Almost five years of therapy and he's just suddenly done.  Never fear, his therapist did not get off easy.  I still sent her regular emails and questions as needed.  {Secretly she loves it!}

-AJ had a follow-up at the dental clinic.  He was diagnosed with enamel hypoplasia.  The enamel on his teeth did not develop correctly.  It is hard, but thin and is not enough.  This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean?  We need to brush his teeth as much as we can.  Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb.  He's pretty good about it during the day now, but at night that what he goes too.  He's still young enough that as his big boy teeth come in they will self-correct.

-AJ started his hippotherapy (horse riding therapy) back up again at the end of April.  His face was priceless as we pulled into the driveway.  This kid has got a memory like his momma.  At least a visual memory, that is.  He's once again riding the pony, Chubbs.  It is amazing to see how much he has grown and how different he looks on the horse.  During his sessions he often rotates between sitting forward and backward on the horse.  The change in his posture is remarkable when he's backwards.   This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture.  Horses are awesome.  His riding center added some new fun things to the arena this year.  AJ really like the hanging pool noodles that they walk through.  It's like a therapy car wash.

May
-My mom and I went on a weekend getaway to Lake Geneva.  Oh how I love me some girlie time.  We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.

-I toured a school here in the area strictly for special needs children.  I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday.  It is most certainly not appropriate for him.  While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment.  Sometimes it takes some outside perspective to grasp what you really need to know.  I ran into a TOD that was part of AJ's initial IEP team.  It's been years since I've seen her but she remembered me and of course AJ.  That little boy touches more people than I ever thought possible.

-We had AJ's IEP meeting in May.  Each year the group gets larger and the space we need changes.  This time, we had 16 people with four tables.  The plan we have in place for this next year was developed from last year's confusion.  I suppose that is the best way to phrase that.  His kindergarten year was rough.  We are using what we learned from last year to make this year much more fluid for both AJ and his staff.  AJ will be in 1st grade in just 3 weeks.  Whoa.  He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.

-In addition to AJ's IEP, we formulated a FBA and FBP.  No, I did not misspell FBI.  A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan.  AJ had quite a few aggressive behaviors at school in the last few months.  As with anything AJ, his reasoning for behavior is not based solely on one thing.  The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine.  Behaviors included biting, graded scratching, and pinching.  Many things with AJ are a mystery or guessing game.  The question I dread, why is he doing that?  I feel like I am supposed to have the exact answer, and I don't.  It is definitely behavior, but also communicating frustration, anger, etc.  The more you fight him, the more he fights back and wants the attention.  It doesn't matter if its positive or negative.  We are squeak toys.  I'll get to the squeak toys later.  The FBP already needs to be changed.  We'll be working on that as we begin the school year.

-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May.  This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation.  AJ did well throughout the evaluation, which we were able to see via a video of the session.  Most of his reactions were congruent with his 2010 evaluation.  The one section of the evaluation that stood out-Olfactory.  AJ's response to lavender was mind-blowing.  It calms him immediately.  We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.

-AJ saw his physical medicine doctor in late May.  This is the first time in a while that we've seen her and haven't done botox.  He didn't need it.  She asked for a follow-up in 3 months, so we will see her this month (August).  AJ has had his night splint for a while now and will not sleep with it on.  Correction-would not sleep with it on.  She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch.  He's been doing very well with it.  The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.

-AJ had another change in his cochlear implant mapping.  He struggles wearing them bilaterally.  At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.

-We celebrated AJ's 3rd Hearing Birthday!!!

-AJ had a slew of appointments at the Children's Development Center.  We had initially wanted to have him tested for autism and Angelman's syndrome.  This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist.  These evaluations were spread out over the month of May.  I've never had reports sent to me so fast.  I love that.  In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation.  Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go.  Add that to the lack of oxygen at birth and you have an AJ.  The information given to us in his referral, estimated 4-6 weeks premature, is correct.  
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention.  We are the squeak toys.  He does something, we react.  Repeat, repeat, repeat.  The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will.  His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school.  What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child. 

-AJ lost his first tooth!  He lost the bottom front right tooth.  It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball!  We never did find it.  My assumption is that he swallowed it.

-I received a call from the PE teacher one afternoon regarding AJ.  He had been nominated for a scholarship award.  A fellow Mom nominated AJ for the S.J.C Scholarship.  S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago.  His family setup a scholarship fund in his name, just as he had requested.  Each year this award is handed out to a student with exceptional needs.  This year, AJ was chosen.  He received $250 to use toward whatever therapies or equipment AJ needs.  We dedicated these funds to his hippotherapy.  I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him.  We are so grateful for the C family's generosity.  I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school.  What an amazing gift for our kiddo.

June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity.  I was asked to be a District Parent Liaison for our school district.  I cannot tell you how excited I am about this!  This fall will be jam-packed full of trainings, but I am so looking forward to it.  Currently there is one liaison for our district..I just so happen to know her.  Well.   I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children!  What could be better than that!!

-AJ graduated Kindergarten.  Oh my cuteness.  School had a cute little graduation ceremony and a song presentation by the kids.  It's so amazing to watch them all grow each year.  One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade.  It was adorable.  And, as it turns out-she's adopted from Guatemala too.  It's a small world people.

-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year.  It was a great weekend and celebrated the lives of those in his family that we've lost.  AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.

-We celebrated out 11th wedding anniversary!

-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head.  As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers.  I've always been mighty curious as to what the little bumps are on his legs.  Something only a mom would notice, but still.  He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that.  The dermatologist could not determine what caused the scar on his head.  She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick.  She took a photo to consult with her colleagues and then requested an MRI.  Here we go with the "He can't have an MRI because he has cochlear implants" speech.  She was very understanding and requested that we have the results of his original MRI and CT scans sent to her.  No one knows what the scar is.  His MRI showed no foreign matter under the scar.   All good news right?  She referred us to the skin surgeon for a consult.

When she looked at his legs, she told me it was not from scabies.  AJ was diagnosed with keratosis pilaris.  The little bumps are due to clogged hair follicles.  You can read more on the condition by clicking above.  While this is common, AJ seemed rather irritated with his skin and scratched at times.  His skin gets dry very quickly.  He has it mostly on his upper arms, his thighs, and his legs.  We switched to FREE products, meaning nothing with fragrance or dyes, etc.  Laundry detergent, dryer sheets, lotion, etc.  WHAT A DIFFERENCE it has made.  It has made a huge difference for our little guy.  I'm so relieved.

-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school.  AJ really did well.  Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.

-My mom moved closer to us in June.  Oh how we love having her closer!  She's truly been a blessing to our family.  I love that can just pop over and not drive a half hour.  It's great!

-AJ turned 6 at the end of June. SIX.  SEIS.  OLD.  We had a Route 66 themed party for him.  I usually try to think of something AJ enjoys.  Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc.  He loves car rides, so Route 66 seemed perfect!  In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers.  We were so excited and grateful for every one's generosity!  Lots and lots of new moms and their babies will be well-stocked!!

-We put up a small (just less than 3 foot) pool in our yard.  Oh what a good idea! No, I'm serious. AJ absolutely loves it.  In fact, he learned to hold his breath under water.  He can hold it for 10 seconds.  This kid is going to be in the Special Olympics for swimming.  I am so not kidding.  The local Y where we hold a membership is quite a drive from here.  It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months.  We're looking at other options for AJ to continue swimming in the colder months.  Water does wonders for him!

-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program!  He'll be starting in January and is super excited!  He's been out of school for 17 months so he's chompin' at the bit get back into the groove.  By the way, its an online program with clinicals locally.  We are not moving to Ohio.  Nuh uh.

July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012.  It was an incredible experience.  Lifest is a Christian music festival.  They had a grandstand and other smaller stages in the biggest park I've ever seen.  We took out our folding chairs and sat and listened to music at the grandstand most of the days.  At night we made a habit of going to one of the tents for the late acts.  We had a fabulous time.  Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing.  Two friends of mine sang that song at our wedding.  Jeremy and I danced in the middle of the aisle.  Forget that there were 10,000 people sitting around us. I bawled.  Uncontrollably.  Therefore, confusing my husband-to him crying means you are sad.  I was not sad, not in the least.  My mind became a Rolodex of memories of our life together.  We've been together 15 years.  That is a lonnnng time.  I was so proud of what we've become and how we have not only survived, but thrived.  We'll definitely be going again next year.

August
-We took a trip to Iowa to visit Jeremy's parents.  AJ experienced cotton candy for the first time, and went on his first real ride.  Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up!  AJ was neutral about the ride, which really surprised me.  We were just excited that he was tall enough this year to ride a ride.

-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy.  We have 12 sessions to squeeze into the remaining of August.  Ufta!  Feeding wise AJ has regressed a bit.  He wants to claw everything and chooses not to use his spoon or fork.  Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also.  Not so.  The right side of his mouth is weak, where the left is his strong side.  The body is a mysterious thing.  He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods.  He's craving oral stimulation constantly.  We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband.  His z-vibe broke and I'm anxious to get his new one.  So much of his organization comes from oral awareness.

-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer.  I felt the need to schedule a "check-in" with his physical therapist.  She said he looks really good, is fully mobile, and is self-correcting.  Music to my ears.  His left foot is turning in considerably, but not from his hip like it usually does.  He's turning in from his tibia down.  We're taping his foot with Kinescio tape.  All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it.  What a difference it makes.  I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic.  It constantly kept coming loose.  I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto!  It worked like a charm.  Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk.  Ok, to keep his foot straight and maintain balance, we take away some sensory.  Such is life.  Back to his PT's thoughts, she literally looked at me and said, "Why are you here?  He's doing fantastic.  And I am not taking him back on my service."  Ok then.  She calmed my fears, as always.  In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially.  His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.

-We had a playset built in our yard for the big boy himself.  The look on his face when he saw it was PRICELESS.  We added a rock climbing ramp to provide nature physical therapy.  We are sneaky parents like that.  He's going down the slide himself, which gets quite a bit of speed!  He climbs up and down the ladder on his own and balances himself on the swings like a pro.  He's an amazing little man.  Having the set in our yard also helps keep him occupied.  Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy.  We love it!

-I'm still taking courses to earn my BA in English.  I'm 15 classes into my program.  My original date of graduation was September 2013, but now it is December 2013.  I had to add two classes to my schedule to fulfill the program requirements.  I had to get to a certain point of the program to choose the classes I wanted to take.  Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?

-AJ had a petit mal seizure last week after waking up from school.  While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me.  We went to a concert that night and I was just drained.  Having fun?  Sure.  But if you looked at me I looked bored out my gourd.  All in all, he's been doing well.  He does have clusters of absent seizures, and I think he knows when they are coming on.  Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking.  Buddy, if I could make them go away, I would.  Believe me.

-AJ qualified for Family Support Program funds again this year.  I made our home study visit appointment this week and am preparing everything we'll need to submit.  We always seem to qualify when changes are about to be made.  I'm not sure how we do that.  Our plan is to have sidewalk in front of the house redone and widened a bit.  New regulations regarding what the program will pay for are coming down from the state level.  Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway.  Despite this, we are ever grateful that he qualified for funding again.

-AJ continues to use his iPad for communication.  Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for.  Jeremy and I were thrilled!  He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo!  We have specific goals in his IEP related to his iPad and he just aced one of them!  During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad.  This little boy amazes me.

The SLP that evaluated him at the development center suggested using ABA flash card apps.  AJ learns best by rote practice and let me tell you, these apps are awesome.  There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc.  She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out.  One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.

-A friend told me about the COOLEST APP EVER.  Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users.  There are several apps that have a dB meter.  Yes, I know this is awesome.  The app is Decibel 10.  I am seriously disturbed by how loud our world is.  Despite this, I find this app amazingly helpful.  AJ has been having a seriously hard time with his cochlear implants.  This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate.  I'm anxious to take it to school and use the app in the school environment.

-Jeremy and I participated in our church's Believer's Baptism in the lake.  What.An.Incredible.Experience.  I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.

-I've been participating in a women's bible study.  The study is appropriately called "Stuck".  The ladies in my group are all amazing women.  Next week is our last week and I am incredibly sad that we won't be meeting anymore.  We've followed this study and I've become a new woman because of it.  Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad.  Each week we've done a "Chica of the Week".  Each of us writes a prayer request and we pick cards from a basket.  You are to encourage and pray for your chica that week.  I absolutely love this idea.  I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week.  Sigh.  What I learned?  I am not alone in my place of stuck.

-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks.  He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.

Is that it?  I think so.  All in all, AJ is doing great.  Thanks for checking in here on the 'ol blog.  She won't be neglected anymore.  Promise.  Ok, I promise I'll try.

Silver Lining

Well, yesterday was interesting.  

He has repeated the same pattern that happened last weekend on Tuesday, so I let him sleep until he woke himself and then took him to school.  Yesterday, he was in a deep sleep again when I opened his door.  I gotta say, I'm missing the "beep, beep, beep...vroom, vroom, vrooms" in the morning.  It is so very rare for him to be that deep in sleep at that time in the morning.  

For a solid week we have been talking with AJ's school team about the observation by one the district's special education gurus.  Which was, of course, scheduled for yesterday.  So, I felt it important to wake him.  He did great during breakfast and getting dressed, but was a bit "off" in the car. I figured he was just tired. As I drove up to school he looked like he was drifting off to sleep.  Ok, so he's really tired.  He was wide-eyed when we parked and I dropped him off as usual.

A few minutes after I arrived home the staff called me, describing a seizure.  "...annnnnnnd he just fell asleep," she said.    Ok, let him sleep. I called the neurologist office and waited for a call back.  I drove up to school, honestly, to check on the staff.  I knew if he was sleeping, he'd wake up refreshed.  Sounds insensitive, doesn't it.  Such is the life of a special needs mother-sometimes.

The silver lining lies in these events:
+ Upon arriving at school I popped in to talk to the health room nurse.  I could tell by her body language that what happened did not cause the staff to panic.

+AJ actually having the seizure at school helps the staff recognize symptoms.  

+ While he was sleeping, two of his aides sat on the floor and navigated AJ's iPad, going through things that a typical school day does not allow time for.
+ I had the opportunity to chat about the seizure in detail with his school team.
+ I had the opportunity to sit on the floor and chat with the special education guru for over an hour, with various members of his school  team filtering in and out of our conversation.
+There truly could not have been a better day for the guru to be observing AJ.  

While I certainly would not like to repeat yesterdays, I am thankful for the silver lining.

First Day Back

(Tuesday)

Today was AJ’s first day back at school following Christmas break.  I woke up victorious, having gotten a full night’s sleep for the first time in weeks. AJ chose today as the first day to sleep in the last two weeks.  Each morning we wake to “beep, beep, beep, doo doo doo, doo, spinny thing, vroom vroom”…you get the idea.  Because AJ needs his seizure medication around the same time each morning, there is no more true sleeping in for this family.  Unless… Jer and I are in Hawaii. There was lots of sleeping in there.  Sigh.

Anywho, I had to wake him, which was rather uneventful.  He had a few seizures during breakfast and maybe two more after breakfast-or what I’d call his attempt to be a bird.  His platform swing…wait.  Did I tell you we put it up?  And he loves it?  He does.  The bolt came out of the joist on New Year’s Eve. We’ve had a bit of a sad boy, but then we pull out his ginormous new body ball (yoga ball) and he’s giggly again.  The swing should be up by this evening. 

Moving forward again…usually we swing after getting dressed, as he knows that’s the next thing in our routine.  Sadly I told him no we couldn’t swing and signed broke while I said it was broken.  When saying, “Do you want you ball?”  I received a big smile and manic signing of please occurred.  I love that little guy.

So roll on the ball we did until it was time to go.  He stopped in the middle of the driveway and starred at me whining a bit.  Hm.  Odd.  Lightbulb! He’s got to go potty.  Sure enough, that’s what it was.  This is what makes things so frustrating at times as he knows what in blue blazes is going on and needs a way to tell us.  I know, you say whip out the iPad.  Well, we’re learning quickly that there is no perfect system (other than saying aloud what you need, honestly) to this.  I knew what he needed, so we went.

We arrived at school and he was tired, but excited to be there.  I spent my morning listening to the pleasant hum of the humidifier while I did homework, sent out 435 emails and making 1,765 phone calls.  It was one of those days.

When I picked him up from school he was sleeping, and slept a good 2.5 hours.  He woke up happy and bubbly.  Happy and bubbly until 11:30pm.  We swung A LOT and he ate A LOT.  All was normal.

I often find myself going over days like this over and over in my head to try and see if there was something I could have done different.  I decided that if I find him sleeping that hard again, I’ll allow him to sleep until the latest time possible and take him in to school late.  We’ll play it by ear. Sleep is very important to kids with epilepsy-it certainly is for our little dude.

Magic Carpet Ride

When AJ first began toddler group at the age of 2 years-11 months, there were three times during the course of group time where the kids would sit on carpet squares.  They'd grab them from a pile by the door, and put them away when they were finished.  It thrilled me the last few days of group, when AJ finally began sitting much better for the beginning circle time and  understanding the concept of holding his carpet square as he was guided to the door, and then dropping it in the pile.

When AJ began preschool it was disappointing to me that AJ was not able to participate in morning circle time, again, on carpet squares.  At the end of his first year, on the very last day actually, I saw him sitting with his friends, sans carpet squares but on the actual carpet.

During his second year of preschool he learned to consistently sat on his carpet square for morning circle time, the ENTIRE circle time and learned to anticipate the routine and participate.  He sat and paged through books with his classmate.  He learned to stay on his towel for quite time, the entire time.  While he struggled with different events (ie Holiday Party/Santa's Visit), the consistency during his normal routine was amazing.

Fast forward to last evening at Meet the Teacher Night for our little boy who is now in kindergarten.   We left the house in a rush on the muggiest day we've had in a few weeks. Eww.  For some reason it is always hot and muggy on Meet The Teacher Night.  I was a bit nervous, even though I knew who his teacher would be.  She had called earlier in the afternoon to chat, which put me at ease.  Less to try and "report" on such a crazy night.  AJ technically has three teachers.  He has his Teacher of the Deaf (TOD), Special Education Teacher, and the main homeroom regular Kindergarten teacher.  AJ will be spending most of his time between his TOD and his Special Ed Teacher.

As I stood in like with AJ's TOD to meet the main homeroom kindergarten teacher, I felt a bit of panic rise up inside me as we entered the room.  It was a huuuuuge room.  To the right I noticed a huuuuuge carpet, in a rainbow of colors.  One row was red, orange, green, blue, purple.  One huge carpet square.  How cute, I thought.  But definitely not appropriate for AJ.  It took literally seconds for me to deem this environment not appropriate for my kiddo.  He would be totally.lost. We spoke with the teacher for a few minutes, whom of course knew AJ already (everyone seems to know this kid) and said she had seen me around.

Meanwhile, AJ was outside in the hallway with his Daddy, having a massive meltdown.  This always happens at Meet The Teacher Night.  We begin our routine of early bedtime and longer days, and he's exhausted.  He had gone to bed at 6pm the night before, so when 6:05 rolled around and he was at school, when he's normally in his PJs in bed, he was noooot happy.  Along the way we ran into many of AJ's classmates.  We love being part of such a special family.  It is amazing.

We made our way down to his Special Ed teacher's room and chatted about AJ's new iPad2 that we were anxious to pick up last night after all the school shenanigans.  AJ's daily schedule is the topic of a meeting between the teachers today, so I should receive a phone call on that later.  For the month of September, he'll be attending M-F until 1:40pm.  At the end of September, we'll reevaluate and adjust his pick-up time as needed.

Our last stop was back in his TOD's room, where AJ made himself at home by finding the fan and...the carpet.  A smaller carpet, with a lovely texture that he sat down on and rubbed to his little hearts content.  At that moment, I knew he'd be fine.  While his TOD and I chatted more, AJ found the carpet even more comfortable, as he crawled into fetal position on the floor and wanted to sleep there.  As we were preparing to leave, he explored the room and found the sink right.a.way.  Crazy to see him walk right up to it and be able to reach everything-he's that tall!

I've had small moments of sadness, thinking about how my little boy is in kindergarten...but he's really not.  It bothered me to buy and sharpen pencils, knowing he won't use them.  He does not know his colors, numbers, letters.  He cannot spell his name.  While my mind has mostly adapted to this reality, every now and then there is a zinger or two that hit just at the right time that I lose it.  But last night was not one of those moments.  The minute I saw him sit down on the carpet, I knew he was in exact the right place.  It was the right place, the right carpet, and it was indeed, magical.