Sunday, September 27, 2009

Published

Some of you may remember a post from a few weeks ago about AJ's last day in toddler group at CDHH. A few days after I posted, I received a call from the Communications Director at CDHH. She asked if they could feature AJ's experience with CDHH in the upcoming newsletter. The newsletter was just released, enjoy!

http://www.cdhh.org/fpimg/Infolink_Fall2009.pdf

Saturday, September 26, 2009

An Unexpected Goodbye

About 2 weeks ago we said goodbye to AJ's SLP (Speech Language Pathologist). It was a rather unexpected, as we thought we would continue seeing her until mid-October.

When AJ's CI was activated, we began focusing on auditory/speech/language, checking in on his feeding skills here and there. He seemed to be doing just fine. We knew we would not continue with speech/feeding at CHW once AJ began school, as he receives speech during his school day, and heaven forbid we commit "duplication of services". Since we had visits covered for after AJ began school, his SLP tapped into his feeding therapy a bit more. That way, we could finish our covered visits and not waste them. It sort of reminds me of that roll-over minutes commercial with the Mom and Son. Cracks me up everytime I watch it.

During our last session, I found myself doing a lot of reflection. He was happy as a lark sitting and eating his peaches while I was remembering how long it used to take him to get used to the room, how we'd have to tag-team him to do therapy on the yoga ball, how he wouldn't let her touch his mouth...the list goes on and on. There he sat giving her fantastic eye contact, asking for more by signing the word multiples times, eating with a spoon, drinking from his cup. He has come a long way from when we started therapy. From not being able to hold his own bottle, having major oral sensory issues, not being able to hear or communicate, to this smiley little boy who charms his SLP to no end, who walks rapidly down the hall to "the door" where she comes out and gets upset if the door opens and she's not there yet, letting her in his mouth, who bit into and chewed a cookie for her, to sitting at the table for the entire session and doing activities, who tapped her hand for attention or something he wanted, to turning to her when she does the Ling sounds. It has been quite the journey.

So from here, Mommy becomes his feeding therapist. We can always return if we have an issue that comes up. We will still see Dione every few months, since she assists with his CI mappings!! Below are some pictures, unfortunately a lot of my good shots were taken with my previous cell phone, which blacked out a few months ago...meaning I lost them all. So, you may see just part of Dione in some of them.

Thank you Dione for everything you've done for our little man! We'll see you soon!!

CI Candidacy Testing-September 2008

Getting ready to HEAR for the first time- CI Activation April 2009


AJ looking up at Dione during CI Activation (I love this picture!)

Koss Cochlear Implant Program Picnic-July 2009

Playing with his all-time favorite toy at his last speech session

AJ and Dione during his last speech session-September 2009






Wednesday, September 23, 2009

Joy

There is no greater joy nor greater reward than to make a fundamental difference in someone's life.

Sister Mary Rose McGeady

Sunday, September 20, 2009

Friday, September 18, 2009

Thursday, September 17, 2009

Extreme Honesty


Another CI Momma told me about this little guy Max's blog. As I do with any blog I'm "referred to", I settled into my comfy couch, clicked on the link, and read from the beginning to current. Many tears flowed as I read Max's blog. You see, Max has cerebral palsy, just like AJ. His blog was the first "CP" blog I read.

Max's Mom wrote an awesome post on her blog about how having a special needs child affects a marriage. And was extremely honest about it. What a refreshing post. I think sometimes we all fear honesty. I am a firm believer that raising a special needs child is not like raising a normal child. How's that for honest. The comments for this post were interesting as well.

With permission, I am posting a link to Max's blog. Please click here to read this fantastic post. Below, I've written some of the things Jeremy and I go back and forth about during any given week (you'll understand once you read the post):

...I know we don't like the theratubing around his leg idea, but its only temporary until he gets his AFOs.
...I know he does well with the spoon and its less of a mess when we feed him, but he needs to practice eating with a fork and eat on his own more.
...Did you see the new list of activities to help him communicate? I know, it worries me too.
...Did you pick up the photos for his experience books? I have to get those up and running ASAP.
...Uh-Oh why is AJ taking two steps and falling? Uh-oh, his muscles are tight again. Is he growing? Does this mean he needs botox? Will he continue to be tight?
...We have to get more Pediasure/Kid Essentials. I think I have more coupons, lets pray its on sale. Did we hear if insurance is going to cover it yet? Remind me to call.
...Sigh. He's freakin' hungry and he's mad. Where is our food? Why didn't I bring the fruit loops to tied him over?! If you get up with him he won't settle back down at the table.
...The insurance company is saying continued OT and PT is maintenance...yes, I already talked to his therapists about it. We need to draft a letter and fight this.
...We both need to stop carrying him so much and take time out of each day to help him work on self-care skills.
...When is the right time to potty train AJ? We said we'd wait till he started school and adjusted. Yep, we'll have to talk to her about it sooner than later.
...It is not good for AJ to close himself in his room and self-stim. It is not good for AJ to walk around with a metal bowl and not play with other toys. Let's find something else for him to do.
...How did AJ do in school today? We need to discuss X,Y, and Z.

Tuesday, September 15, 2009

Smitten

Yesterday morning we arrived at school just in the knick of time. All of the girls were sitting on the bench. When we walked in they all *gasped* and said, "AAAAJJJJJ!"

Oh Lordy. I think I'm in major trouble! Their gasp was like when you see a little girl at Disney World...as she spots Cinderella in the distance, she turns to her Mom and says, *Gasp-Breathe-Gasp* "Mommy! It's Cinderella!" It was too cute for words. He did receive the same greeting this morning, although with a little less enthusiasm.

He has already held hands with the girls, which they initiate, let me just say. I've heard from his teacher that a few of them have really taken to helping him in class. This morning, my heart just melted. One of the girls came over and put his CI coil back on his head when it fell off. When it was time to line up, she came over to me to take his hand and walk to the classroom. I think its the eyelashes!

The only thing-AJ isn't so smitten with his classmates. Any of them.

We've been so blessed to have daily contact with AJ's teacher. Last week he struggled at a water-based activity with "sharing" his space with another child. It lead to tears. He was given a break and then redirected to the water table again and he was still frustrated with sharing his space.

I really dislike this (my lame Ode to Facebook). His lack of socialization is now beginning to scare me. Will he ever get there? I'm also feeling a mega load of guilt. While other kids are playing at the waterpark and eating popsicles, my kid is enduring long drives with hours and hours of therapy and doctors appointments.

When he came home, we knew he needed to bond to us. That's all that was drilled into our heads. Don't let others hold him. Then it was don't let them meet his needs-you only. Oiy. What we didn't know was how behind he was. We thought we as parents would miss a lot, adopting him at 13 months. In a way, God blessed us, as AJ came home at a newborn level. We were able to give him his first solid foods, his first real bath in a bathtub. We saw him crawl and saw him WALK. We saw him HEAR for the first time. However, I don't think it benefited AJ coming home with a history of 13-months of NOTHING. We immediately got him into intense therapy and began his awesome adventure.

There wasn't much time for playdates. And the few playdates I went to, I ended up bawling all the way home. If ever there was a place I didn't feel comfortable and had the reality of AJ's delays and differences in front of me. This was it. And no one was making me feel that way, its just the way I felt given the situation. I spent more time calming AJ, working through his sensory issues, feeding him, and explaining why he was doing "this this and this" to the other parents while everyone else's child was running around in circles, feeding themself and asking for more milk. AJ just "didn't get it", and soon they become unimportant. PT, OT, Speech, Feeding, and his TOD visits were definitely the priority.

Some people have assumed that AJ was used to being around other children since he was in a orphange. We thought so too, at first, but now know he was either held or just layed on the carpet, next to the other children who were more mobile and placed on the foam squares in the play area. Why? Because he was so small and immobile. While I'm thankful they thought about his safety (some of those kids were chunk-a-monks), the other part of me burns with anger knowing his only "friends" were Sylvia, his caregiver, his hand (which he starred at-and still does occassionally), and small rattles. And, if he couldn't hear...yeah. He had no clue those other kids existed.

I'm feeling guilty that he hasn't been around kids more. While I know a part of it is his developmental level, it still bothers me. I'm slightly jealous of those Momma's who live on streets/in neighborhoods that have families and kiddos galore. We live on a country road where we are one of two families that are third-generation. It makes me angry and very sad that we know his brother is in Guatemala and there isn't a damn thing we can do about it. We've TRIED. We would love for AJ to have a sibling or siblings. It makes me angry that adoption is so freakin' expensive. It makes me angry that our experience has made us very leary of opening our hearts again and trusting those in the adoption industry. It makes me angry that politics have essentially shut-down international adoptions. It makes me sad and angry that we can't just say, "Let's have another child." It is simply....Not. That. Simple.

I had another chat with AJ's teacher after school today, which calmed me down a bit. It seems he did well with his peers on the playground today. Per his teacher's suggestion, I am going to make an appointment with his Developmental Specialist, whom we haven't seen in quite some time. He may have some ideas as to how we can help AJ become a social butterfly, well, at least be social. He has not seen AJ in a year and I remember him saying, "Let's do the implant, give him some time, and see where he's at." I think he'll be pleasantly surprised. We are all working together to form the best program for AJ.

My new goals are to schedule a playdate for him at least once a week, focus on the good "peer-interaction" days he has and to take the bad in stride, and to give him more opportunities outside of school (other than PT and OT!).

And might I add, I certainly AM SMITTEN with Mr. AJ.

200th Post!


Well ladies & gents, we've hit 200 Posts!! WOW!

To celebrate, we're having a little give-away!!

Please leave a comment (under this post) and share your favorite story/post on our blog. We will choose a random winner on Saturday, the 19th.

How do you leave a comment?

Scroll down just a teeny-tiny bit to where it shows "Posted by AJ's Mom" at whatever time of the day. Next to it will show the # of omments. Click on 1 COMMENTS (don't click on the envelope with the arrow). I've already made a comment to start things off! Enter your comment in the text box provided, then select "who" you are commenting as. You can choose Anonymous, but then make sure you end your post with you name!

ATTENTION STALKERS: This is your chance to say HELLO! I too have been guilty of stalking other blogs and have 'fessed up to 3 of them recently. It feels good-try it! :)

Thanks for keeping up with AJ's Awesome Adventure!

Thursday, September 10, 2009

A Few Weeks Late

Here are some pictures from AJ's 2nd Gotcha Day Celebration. We celebrated by going to our favorite Latin Food Restaurant, Antigua Real. The owners are from Guatemala! AJ's GodMomma, Auntie Jodi, joined us. I can't believe he's been home 2 years.

AJ's Welcome Home Announcement-August 2007

Antigua Real

The Schmidt's-2 years later

Checkin' out the awesome waterwall

Dad & Auntie Jodi ("Heidi, put that freakin' camera away!")

The Fam

AJ had a burrito, rice, beans & an extra order of rice and beans!

Bean Smile

Fried Plantains

Diggin' IN!

Yummy!

AJ & Auntie Jodi

Wednesday, September 9, 2009

Knowing and Doing

I'm sitting in my new found sanctuary of peace and quiet. The library.

And thinking. So much that my head hurts.

After school yesterday, I was able to chat with AJ's teacher for a few minutes. She explained to me how AJ's day is structured. She currently has parallel days planned for AJ and the other kiddos in his class. All of the other children in his class are 4. Yes, I said 4 years old.

Which means, not only is AJ the youngest at 3.3 years old, he's also the youngest, by far, developmentally. What is appropriate for the other kiddos isn't appropriate for AJ. We knew this but had wondered, with full trust in his teacher, how this was going to work.

We are thrilled with the schedule he has. He is SO where he needs to be. But I can't help but feel a little saddened that his developmental level keeps him from engaging in the activities that his peers are. His lack of socialization is something that is really beginning to worry both of us. When your child has a hundred therapy appointments a week, play date invitations are constantly turned down...and the invites eventually stop coming. Not only that, but his play skills range from solitary to the onlooker, to some parallel play (ie plays independently but beside others with same or similar toys).

Knowing that he would be in school with his peers was exciting to us. As AJ progresses and brings his levels up, his schedule will be adjusted appropriately. At this point he is with his peers for snack, on the playgrond, and during free-play at that classroom's different activity centers. Yesterday, he was at the art center, painting with dog bones and making spots on dalmatians with cotton balls.

His one-on-one instruction is going well, don't get me wrong! In just a total of 5 days at school AJ has shown major cognitive gains:
-Remembering the classroom
-Walking around to the front of school to find Mom when it was time to leave instead of gravitating toward the playground
-Signed 4 WORDS in a row to his teacher last week and then got upset yesterday because he wanted strawberries at snack and they weren't having strawberries even though he kept signing strawberries to his teacher
-Came to Mom and got excited when we did bubbles over the weekend, because they are doing bubbles each morning with him at school
-Shows more interest in books both independently and when being read to
-Has gotten better with transitioning from activity to activity in school
-Is comfortable with all of the teaching staff that is working with him
-Gravitates to the snack table where all his peers are at snack time
-Climbs in and out of his chair on his own

A few weeks ago I pulled out all of his tests/evaluations...and mentioned I would post about it. No time like the present. Please keep in mind that AJ is 39 months old. If we really want to be technical about it, he was at least 2 months early, so thats 37 months, then minus the 13 months of nothing in the orphange, thats 26 months...........

We are still stuck at 15-17 months for gross motor skills. Who knew walking backward, kicking a ball, throwing a ball, and walking sideways are learned at 15-17 month age level! I know this sounds silly to most, but I want to see him jump on a trampoline so bad. I know his Daddy would love to play catch with him. I want to see him zoom around the driveway on his tricycle. We are working on more independent walking, walking on uneven surfaces, and climbing.

His fine motor skills are average for his age-YAY! We still continue to work on getting him to put things "IN" to a container-consistently. He gets the concept, and knows how to do it, he just wants to do it when he feels like it, or with the toy that he wants. He prefers the mailbox & letters toy at the Speech clinic rather than the Piggy with the Coins at home. His self-care skills are below age level. And forget stacking-no interest AT ALL. I secretly think he can read these evaluations and decides not to do the task required. Seriously. We are working on placing simple shapes into an insert puzzle, stacking cubes, copying a horizontal line, a vertical line, and circle, and participate in appropriate dressing skills.

Moving on to his auditory skills...I revisited the Auditory Skills Checklist. I was amazed when I opened the copy his TOD gave me. The chart had nothing on it except the date of 1-28-08 and under #1 (wearing amplification during waking hours?) of the Detection section: 4hrs/day, in the evening he's very active, they whistle a lot and come out. Under #2 (use body language to indicate when something is heard?): startled. This was done on our TOD's very first visit; when AJ had hearing aids. Nothing else was filled in. Wow. I started going through and am pleased to see that he has more S's (has skill) and E's (emerging skill) than D's (doesn't have skill). The Detection, Discrimination, and Identification sections had mostly S's and E's. I found that very exciting.

In pre-symbolic communication he's at around 8 months, with scattered skills above that level, and missing some in younger levels that are speech oriented-for obvious reasons. We need to work on: repititive cooing of one-syllable "ah-ah-ah", vocalizing consonants in combination of one vowel, consonant-vowel syllable repitition "ma-ma-ma", imitation of adult-produced changes in pitch and loudness, and much more in imitation. All of the things I just listed are under 7 months, which astounds me. We also need to work on waving "Hello and Bye-Bye", imitating non-speech sounds-raspberries or tongue clicking, and clapping his hands. He's 4.5 months hearing, so.... The checklist goes to 16-18 months, I'm making the completion of this checklist a goal.

For the SKI-HI Language Development Scale, he's stuck at Unit 5, 8-10 months. He does have one or two skills in each of the Units 6-9, which is 10 through 18 months.

While we've never been ones to focus on numbers, I still want and need to know where AJ is and what we need to work on, in specifics. My "Type A" personality is kicking in-big time. And I'm aggrivated with myself because I KNOW that I could be DOING more at home for AJ. I can tell he is bored out of his gourd at home, especially now that he gets so much structure and routine at school. The four days off over the weekend were, ah hem, interesting. More self-stimulation, more wandering into his room and wanting to be alone and self-stim, more wandering with objects that weren't his, more pushing of Mom and Dad's buttons.

I need to make that workboard I've been talking about since Aiden's Mom posted hers. I need to find things for us to do that are structured play. I need to create a functional space for AJ to play and learn at home. His art bin (which is overflowing) is over here, books are over there, this is in another room, and thats over there. Craziness. I'm resisting the urge to empty my entire living room and create a space for AJ. Complete with a fresh coat of paint, a futon from IKEA, and maybe one of their floor to ceiling storage cubby thing-a-jigs. If anyone has any suggestions, shoot!

Then again, maybe I should just steal Peas' playroom in the middle of the night. Or maybe Peas would let me veg out in his playroom and play trains and I could forget about this whole mess.

Choo Choo.

Friday, September 4, 2009

Since these are the hot topic in the blogging world...

...here is our calendar. I made it a few months ago in an attempt to help AJ understand the routine of the day.



We are just now getting to the point of leaving the calendar up on the door, pulling the activity cards off at the appropriate times, and talking/signing about what we are going to do next. At naptime, I change the cards for our afternoon routine.

I cut a piece of cardstock in half (length-wise) and laminated each side individually. I then used packing tape to attach them make one long strip. I used velcro pieces on the strip and on the back of each activity card. I created a chart in Word using pictures of AJ doing certain activities, as well as clip art. I wanted to him to get used to seeing a variety of things for art time, therapy days, dinner, etc. (not just the chicken nugget picture). I cut each card to size BEFORE I laminated them. Let's face it, anytime I get a chance to use my card making supplies-I'm thrilled! The laminator I have uses sheets that open on one end so you can arrange your pieces and then close it and send it through the machine. I LOVE IT! **Shameless pitch: I got my laminator @ Target for $29. The ones online and at the office stores are way more expensive!

I do really like the Listening Room calendar, but I think its a bit beyond AJ's level at the moment. Our's is a bit simpler and seems to be doing the trick. I still need to make a pouch to keep the cards in-that can be attached to the door as well. And I do like this workboard from Aiden's Mom. Oh my, it looks like I'm going to be forced down into my stamping oasis again.
(HAPPY DANCE!)

Wednesday, September 2, 2009

Strawberries ARE in Season...


At least in AJ's world they are!

Today, on Day 2 of Preschool, AJ's teacher reported me that during snack he SIGNED:

Strawberry. (pause) Strawberry. (pause) More. (pause) Strawberry.

HOLY COW!!! I could hardly believe what I was HEARING!

What was equally as awesome was when she was telling me the story...his teacher has the BEST animation and tone in her voice. She said/signed "Tell Mommy what we had for snack today. We had strawberries." AJ's eyes immediately looked up at her when she said the word strawberries-and he grinned at her. He recognized the word!

We now have TWO WORDS in his signing vocabulary. WAHOO!

AJ's 1st Day of School

Starting out with a Big Boy Breakfast...Cereal & Milk

Daddy helping with his backpack

Ready to Go!

Ridiculously Cute!

I need my backpack, Mom

Here we Go!

AJ's Shelf & Hook out in the hall

AJ's First "Label" with his name on it (LOVE IT!)

His chair in his classroom

He found his favorite spot (in front of the soundbooth) right away!
See ya Mom & Dad!

Pick-up Time! Mommy brought me balloons!!

I wanted to walk with them into the house!

Big Boy Lunch

So Grown Up!

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