Sunday, October 25, 2009

A Plethora of Cloudiness

So, yeah. I've started multiple posts only to delete them. Unsure of what the title should be (the one above is pretty good, hey?) and unsure of where to start.

PT & CP:
AJ received both his AFOs in the mail two weeks ago. Why they mailed them, I don't know. We soon figured out that they were way to long and needed to be trimmed. AJ currently wears a size 5.5 shoe. The only shoes that would fit with the AFOs on: 9. CLOWN SHOES. We had them trimmed this week so they fit much better. We found some Stride Rite shoes yesterday, which were on sale and a heck of a lot cheaper than the special shoes they make for AFOs. They are a size 7, but aren't much bigger than his old 5.5's. We pulled out the guts AKA the pad your foot sits on inside the shoe. This makes his shoe a tad deeper and helps the AFO fit better. The shoe is very flexible, yet has a good base. I was pretty excited to find them.

He's doing very well in his new AFOs, he'll be wearing them to school for the first time tomorrow, so we'll see how that goes. You can totally tell when he tries to walk by hyperextending his knee. Oops, sorry buddy, not gonna work! His walking in slower and much more controlled. They also make crawling near impossible. Now he's pretty much over crawling (I'd say 95% walking/5% crawling) but this gets us that much closer to 100% walking. If he falls, he gets right back up to continue walking.

His left foot/leg are rotating in A LOT. When we got to PT/OT last week, AJ's left shoe, while walking, was perpindicular to his right foot. His two feet together could have been a perfect backwards "L". Scary. I voiced our concern to AJ's PT, who said she knew it was going to happen eventually. Well, at least she saw it coming. His foot/leg is turning in due to his tone (CP). His left side has been super tight off and on for the last few weeks.

There is nothing we can do as far as exercises go. But, we can help it with the AFOs and the de-rotation straps. Here is a photo of AJ the first day we put him in the straps.

Now, the excess straps are hanging to the left and right because, I'm convinced they gave us the XL child size. Of course, since my child is XS. Anyhow, I've since trimmed them, so there isn't all this excess strapping everywhere. He can wear the straps under his pants, which is great. Although I'm not sure how they are going to work with potty training. Its already a trick to change his pull-up with these monsters on. Can you tell they drive me nuts? The purpose of the straps is to avoid botox and surgery. They are called de-rotation straps as they help keep his feet straight and not turn/rotate in. SO-needless to say, he's wearing them whether Mom likes it or not. His PT will continue to keep an eye on his left foot/leg. Since AJ is already an established patient with his physical medicine doctor (thanks to our PT's early thinking!), we'll be able to get in or get what whatever AJ needs in a timely manner.

His climbing skills has definitely improved. He crawled into the ball pit all on his own at his PT session last week, without using the aide of a smaller step-stool. His PT was very impressed.

AJ's use of his left hand has dramatically increased, which his OT was very pleased with. He's also created this (annoying) habit of picking up and clutching small items with his hands. He's shifted to using the right hand to clutch, so he's leading with his left hand a lot. During his OT session last week, he reached and pulled out puzzle pieces with his left hand-by choice. If you present three blocks to him (to stack), he will guide your hand or the block itself to stack them. He continues to make gains with container concepts and shape sorting. At OT his placed the circle into the correct slot of the shape sorter!

AJ has made some big gains with eating. His cup drinking has improved here at home, with less and less leakage. Unfortunately, his open cup drinking has gone haywire. I'm not sure what that is all about, but I'm thinking its the consistency. I'm ordering some thickened apple juice (both the nectar and honey consistencies) to use here at home. The honey consistency used to be his "treat" at speech/feeding therapy. he couldn't get enough of it, and it 'slides' slow enough to help him learn flow control. He is loving Lorna Doone shortbread cookie crisps, animal crackers, cold cereal with milk, hard chocolate chip cookies, and anything else he can bite. We've also seen some great tongue lateralization and chewing. His entire tongue was on the right side of his mouth the other day-meaning he was using his left tongue muscles to chew. Amazing. His swallow study is scheduled for mid-November.

AJ continues to make steady gains at school. We had our 2nd home visit from AJ's teacher last week. AJ definitely knows his day. He knows he has to complete an activity to go on to the next. He seems to know just about how long each activity lasts. He is now using an eye gaze/making eye contact with his peers on a regular basis. We were so thrilled to hear this! He crawled through a tunnel with a flashlight with his peers. He has definitely become comfortable and developed curiousity in his environment. One of the other kids left the water running at the sink...AJ saw the water running, walked across the room, climbed up the stepstool and stuck his little paws in the water. :) He's also understanding the concept of "give it to me", when an adult asks for an object. Now, he may not give it to you, but he knows what it means. What kid is really going to give up a toy he wants?

We've also noticed that AJ has a hard time using multiple senses. Meaning, if his eyes and hands are focused on a toy he's playing with, he won't "tune in" to his hearing. This is comming with children with hearing loss (good to know, right?) and isn't something out of the ordinary. We are challenging ourselves to engage AJ in activities that encourage the use of multiple senses. Sabotage plays a big part of our day.

I voiced our concern about AJ's lack of speech sounds. There is more meaning behind this, which I will share in the "CI section". AJ's teacher agreed. Most of his vocalizations are still "technically" cooing and early babble. She shared that AJ may need some tactile cues to help him learn to use his vocal cords/use his voice. She shared a story that calmed me almost instantly. We talked about strategies, such as using a voice light and placing our hands on his neck to encourage him to use his voice. The concept is emerging, as we play a flashlight game that AJ's Birth to 3 TOD taught us. He understand the turn taking now (we vocalize and the flashlight turns on, when we stop, it turns off) to the point where he'll hold it up to his mouth, with random vocalizations I'd say, em, 20% of the time? But he knows he'll hear my voice when he puts it to my mouth. This is a great improvement. We also discussed a picture board. We discussed using it short-term, as a way to help AJ communicate. I'm still mulling that over.

We also discussed his lack of signing. We broke down a handful of signs to figure out how many hand positions were in each. Did you know there are 6 different hand movements to create the word "help"? They've been working on mirror play with AJ at school, using his own image in the mirror, along with photos of Jer and I. Mommy and Daddy are easy hand positions. I swear he signed Mommy the other day here at home, but I'm not sure. The only sign he does is "more"- still. I don't know. And I wish I knew.

All in all it was a great visit. Oh, and I think his teacher now fully understands my addiction to the $1 bins at Target and various other stores. :)

If you haven't noticed the ticker at the top, AJ has now been implanted for 6 months! Time flies. I'm working on a video showcasing his skills, which I hope will be done soon. In the meantime....

I am so frustrated, I could spit tacks. How can I say this nicely? We are being met with fierce opposition regarding AJ and a 2nd implant. There is a great white elephant in the room. I'm not sure what kind of progress they want him to make, but clearly what he has done is not enough. I just don't get it. AJ is not the typical CI patient, he's got multiple issues. I get it. When they don't see typical progress, it creates hesitation. Well, stop hesitating! You spent all this time telling us we should have low expectations going into his CI and that he may not talk and blah blah blah. Now he's blowing us all away, and its still not enough?! We are determined, and if that means going to Portland or another region, we might just have to do so. Ugh!

I know that was vague, but it was vague on purpose. Moving on...

AJ is learning conditioned response with the two of the Lings. He interrupted his OT's conversation with dead-on eye contact and vocalizations (he was also signing more intermittently) when she (naturally) stopped swinging him as she was so deep in conversation. She didn't notice he was trying to get her attention, but I DID! When I told her he was trying to get her attention, she stopped, turned to him and asked if he wanted more, he signed more. He knows the difference between people's voices. He made direct eye contact with a complete stranger today. He didn't see her at first, but turned when he heard her voice, and then made eye contact for a good 10-15 seconds while she was talking to him. It was amazing. He's beginning to pay attention to music. He has a real big crush on Beyonce. I don't know what it is with kids and Beyonce!

AJ's Great Grandma (my Grandma) was diagnosed with lung cancer and cancer in her lymph nodes a little over a week ago. She is my 89-year-old spitfire, sweet as pie and sharp as a nail Grandma. Enter the plethora of cloudiness. Jeremy and I left for an overnight getaway to Madison the night after she was diagnosed. I'll admit it was a little hard to enjoy the Badger game with cancer on my mind. I was so distracted I forgot to take AJ's backpack to school one day (which is SO NOT ME) and continued to function, or should we say try to function in a cloudy state of mind for the rest of the week. We're still in a holding pattern, waiting for more scans, tests, and results before decisions are made. She's busy entertaining the hospital staff and is enjoying her Great Grandma bragging rights, sharing AJ's photo with everyone she sees. That makes me smile :)

Sometimes there is just so much going on, we feel like we can't function or focus. This happens a lot with AJ and his personal agenda, but with my Gram's news, put a fork in me. We've had quiet weekend, which Jer and I were both thankful for. I'll leave you for now, since we are seriously behind on our plethora of DVR'ed medical dramas. Such party animals we are....

Monday, October 12, 2009

Mom's Little Helper

AJ helped me make Southern Banana Pudding for Daddy....

Sunday, October 11, 2009


Well...we are officially a no-nap household. I'm not sure I expected it to happen this fast. Then again, AJ is almost 3 1/2. While it has made our days seem very, very long, it is a relief to put AJ to be at 7pm and know that he is going to sleep. No more busy-body activity in our bedroom before we go to sleep. We've had a few days here and there where he's fallen asleep in the early afternoon. On those days, we watch the length of time he naps very closely.

AJ going to bed early has given us a chance to unwind and can you believe this: talk. HA! Talking one-on-one without a 3 year old trying to spoon an entire bowl of pudding into his mouth is much more productive. It also helps that I'm not trying to stay awake late at night with toothpicks holding up my eyelids.

Here's a run down on the latest:

PT: After a big mix-up, we finally have 2 AFOs, not 1! They came in the mail (weird) and insert panic when I put them on...and they did not fit into his shoes. One phone call to his PT later, panic mode ceased. Bottom line, I need to put him in bigger shoes. They should actually help his balance even more (I was imagining him walking around in clown shoes). We'll try them for a few weeks and if it really isn't working, I'll have to take him back to his orthotist to have them trimmed. We don't want to trim too much, as they are molded a bit longer to allow for growth. We don't need to be getting him new AFOs every 6 months due to growth. This is the age where he "should" have a growth spurt, so we'll see. He also received his de-rotation straps. Ugh. They are going to be quite the challenge and I don't like them-AT ALL. That's all I'm going to say for now.

His PT hasn't seen him in a few weeks, (even though we've had PT with other staff at the clinic) so I was very pleased when she was so impressed with him last week. His left leg has been MEGA tight the last few weeks, and he was nice and loose for her. She complimented me on working it out. That felt good. I did mention his left foot is really tight, and she agreed. We are to continue our foot exercises and she added a new one that makes him giggle. Thank God he's ok with exercises, it would really suck if he wasn't. We need to watch his foot so that he does not become a toe walker. While we were just watching AJ walk around the other day, another Mom told me that all she sees is AJ-perhaps a bit unbalanced-but just AJ-and I see the foot turning in, the this, the that. It is true. While I'm not obsessive about it, I keep on top of it. AJ's team has trained us well. I knew God gave me the memory of an elephant for something....

OT: AJ received his left hand split two weeks ago. He tolerates it just fine. He'a already swirled it around the toilet water, so its nice and broken in. And washable, by the way. The splint is soft and keeps his thumb out. It also has a metal stint that keeps his left wrist from curving down. He's really at a point where we hemmed and hawed with his OT has to whether he'd need it by the time he got it, but it is helping. His wrist plays games with us. Some days it acts up, others it doesn't.

AJ continues to make gains in fine motor skills. He's been introduced to a swinging bolster at his therapy clinic. He's holding on to the rope and providing himself stability very well. He also painted with pudding with both his hands and feet last week.

GI: Jeremy and I want to rule out a tapeworm. Somehow, and don't ask me how, AJ was never tested for parasites by the GI Clinic. We know he was tested by our pediatrician when he came home (results: negative), but why the #($%*% didn't the GI Clinic test him? Anyhow, Jer's had his feelers out at work (sometimes it pays to work with lots and lots of doctors) which has revealed that not only should he have been tested, the test should have been repeated 3 times. Fantastic.

Needless to say, we have the collection kit and will get it to the lab this week. This kid is eating like a horse. Now, he may just be a super-burn-lots-of-calories-CP-kid. But we won't stop until we get a freakin' answer. My favorite part of this is when I called to inquire about testing for a tapeworm and was informed we didn't test for parasites period, I asked why, and received the response. "He doesn't have the symptoms." Well, my kid didn't seem to "display" symptoms of a child with CP or DEAF when he came home, now did he?! Don't give me the symptoms crap.

On the bright side, we went in for another terrifying weigh-in last week, AJ gained a full pound. This is great news! His height is the same 2'9". I haven't heard from his GI doctor yet as to when he wants to see him again. For now, we're safe.

Eyes: AJ had a follow-up appointment last week, with full dilation. He had a fantastic day. He was comfortable in the doctors office, in the room he walked around and explored. I've never seen him do that. He sat on my lap, responded to her "clicking" sounds she made with her mouth to direct his attention to her light. That activity just astounds me. I don't know why.

He did great in the waiting room while we were waiting for his eyes to dilate. He noticed the other kids. I observed sisters with their two kids while waiting, they were nice, but were starring at AJ like no tomorrow. Just ask me, I don't care. Ask me, I'll tell you. They left and another mom came in, with a son who had Down Syndrome...and had hearing aids. He was adorable. She was filling a large syringe with water and was administering it (g-tube) while he was on the rocking horse. We smiled at each other, encouraged our boys to say hello, and I just felt, at home. She didn't even see AJ's CI. But there was a comfort there that I wish I felt with those other parents. Hm.

AJ has never wanted to go into the toy corner. He always stays by the patio doors (condo building made into offices). I guided him toward the toys and he found the puzzles right away. We sat on the floor and played with the puzzles and then with the rocking horse...on which he discovered he could rock himself back and forth. When he was done, it was our turn, and he again was a champ for his eye doctor.

He needs glasses. Its only a small perscription due to his astigmatism, but its mostly to help him focus. Hopefully this week I'll get over to Jer's work to order those. AJ's been picking up the most tiny things off the floor. How that's not focusing, I don't know.

CI: We had AJ's 6-month post activation audiogram last week. He tested at 25db. Which totally floored me. My deaf son, who heard at 110db+, can now hear ABOVE the speech banana. Amazing. AJ sat like a big boy in my lap (which he's never done) and tested really well. We've had AJ wearing the BTE (behind-the-ear) set-up for about two weeks, thanks to Peas' Mom encouraging me to take that leap. We love it and AJ's audiologist was also very excited with this change. He's making continued progress and even had 6-8 more gains on this checklist we complete at each visit. The next step is to get AJ vocalizing more. More and differently. Let's see some consonant and vowel sounds, lets do some ma-ma-ma, let's use our voice when we want something, let's respond physically to music. Those sorts of things.

AJ's eye contact/eye gaze continues to improve as well. This is a major gain. While at his appointment, we also had the pleasure of meeting the new audiologist that joined our CI program. She was very pleased with AJ's gains in just 6 months. She also told us that Lowell's program is one of the best in the country. For Tammy and Tina, she compared it to River School. YAY!!!

On a very sad note, we found out AJ's ENT/CI Surgeon is leaving. I can't even tell you how this upsets me. He will be missed, but we are in good hands from here on out. Portland, Oregon: You better appreciate this great man!

Feeding: AJ's struggling with his head position during eating. Per suggestion of his SLP at CHW, we are doing a swallow study to "rule things out." We all think his action is a compensatory strategy AJ's uses to help gravity aid his food going down. But, we want to be sure. Basically, he gets to eat in the x-ray room in a special box-like chair. We need to put barium (unflavored) on his food and they will take pictures while he eats. The swallow study may help us gain more PA (prior-authorizations) from insurance to allow more feeding therapy. Even if we only check in once a month, I think it will make the whole team (us, CHW, and his school) feel more comfortable. He has made great strides with chewing his food though!

CP: After his eye exam, I took AJ to have his baseline x-rays done. The CP doctor (filling in for his regular doctor) we saw in July ordered them. Kids with CP are are risk for scoliosis, as well as many other things. Now that AJ is 3, they wanted to take baseline x-rays of his back and pelvis to have a starting point to refer back to as his grows. I was very leary as to how he would do. He did FANTASTIC. Seriously, fantastic. Another example of how he's really tuning into his world. He did have his CI off, which amazed me even more. I have no worries about the swallow study being done. He did so well with the baseline, and for the next one he gets to eat? Easy. We have not received the results of the baseline x-rays yet.

School: The representative from our home school district did come and observe AJ and the program as a whole last Thursday. I guess it went well, as she stayed over an hour and I received a message later in the day saying what a great program Lowell has and that we'll meet again in November. A bit of relief there.

AJ continues to do incredibly well in school. He did have one rough day last week where he came out screaming bloody murder (and none of us know what that was about). Overall, he is just amazing us. It is THE COOLEST thing on the planet to have him come home and JUST DO A SKILL. Like, hey, no problem. And he does it with this look, like "Whats next Mom/Dad." Too funny. AJ's teacher and I do a lot of emailing back and forth. We are so grateful that she takes the time to care about all of AJ's needs.

House: Jeremy and I have never been good at asking for help. When AJ came...and then his issues were surfaced...we got even worse. To be honest, I think a lot of that came from people's reactions to AJ's special needs and the "let me know if you need anything" generic comment that never turns into anything because their own lives continue, they forget, or don't have time. While we certainly didn't expect, we were let down. I think too that we ended up building a wall, since we got so used to not being able to depend on others. I may sound judgemental, and for right now, I'm ok with that. There was a time I had no sympathy for the normal/typical/average Mom who complained about everything that had to do with their normal child. I had no sympathy for someone who wasn't running their child around town to doctors appointments and therapists. I've gotten much better, although there is always room for improvement. Bottomline: We learned to deal. Just the facts jack.

Very kind friends of ours have offered their help with helping us get the house ready. I cried when I read their email. It was the answer to a prayer I had been repeating for a long time. Relief. I've started on all those to-do lists, and hopefully, we'll start to see some progress. To our friends, you know who you are...thank you.

So, tonight, I'm feeling a bit of relief. It's a nice change of pace.

Wednesday, October 7, 2009

Sick To My Stomach

At our final IEP meeting back in June, it was suggested that we reconvene 8 weeks after the start of school to discuss AJ's progress and to make any necessary changes to his IEP.

Now, we assumed this meant discussing AJ's progress, reviewing and if need be revising his IEP, possibly changing the number of mornings per week he would attend if four days was deemed too much or too little, and maybe addressing/adding new goals.

Well, apparently, it also means we'll also be discussing placement.

Placement. Placement? Placement.

That's right. Each time the IEP team meets, it is the responsibility of the entire team, including Jeremy and I, to review all placement options. This, even though his IEP is written for the 2009-2010. While I don't see it happening, the very mention of AJ not being in his current program at Lowell makes me sick to my stomach. When I read the word placement, I lost it. Top that off with a ride to his school for a Market Day pick-up that went wrong when some lady decided to rear-end me and you've got a fantastic day. *Sidenote: We're fine, just a paint scratch. I'm sure she thought I was crying because she hit me.

Lowell is exactly where he needs to be. I could write a book about how wonderful this program is, its one of the best IN.THE.COUNTRY. Hello?! We find it highly unlikely that AJ would be taken out of this program, but just the fact that its going to be discussed even as an option disgusts me. The LEA rep from our home school district is coming to observe AJ and the program at school tomorrow. I do hope that this opens her eyes, and that she can relay to the higher-ups that this is not about something as simple as an FM System and carpet. He is a child, not a number. His issues are not standard, they are complicated. It is not just about hearing loss, which first you'd have to understand hearing loss and well folks...they don't.

I wouldn't be me if I wasn't worrying. Everyone told me his IEP would be fine, yet we left a 2 1/2 hour meeting with 15 people present with no answers. Today, I don't have that fight in me. Note, I said today. If we have to fight again, we will. If we have to appeal a decision, we will. We intend for AJ to attend Lowell as long as possible.

Many people have asked me if we are "still" moving. Shortly before AJ started school we decided to stay in our current home and see how the year went. It didn't take long for that idea falter. Everytime I think about our home district being involved in AJ's education, it makes me cringe. The idea of having another annual IEP meeting next spring, giving Muskego the power to say yes or no to AJ going to Lowell, is not going to happen. We are moving, the question is just when at this point. Given that we want AJ at Lowell for the next few years, its a no brainer.

Now we just need to continue working on the house as much as we can to get it ready for sale. I've been coming home while AJ's in school. The drive isn't too bad, as there isn't any traffic. The cost of gas and milaege is horrid, but hey, I'm being productive. It won't be doable in the winter, so for now I'm coming home and getting as much done in an hour as I can. I was worried at first that we wouldn't find anything in Waukesha to suite our needs. And then I realized I was thinking about what other people think we should have, etc. I always told Jer I'd be happy in a cardboard box as long as I was with him. Now obviously we won't be in a cardboard box, but whatever we do find, it will fit our family just fine. With a little elbow grease, anything is possible.

It's going to be quite the challenge to keep the house in "showing" order with AJ, two gigundo dogs and two cats. Won't we be the happy little family driving down the street with a partridge in a pear tree and the cats whining in the backseat all stuffed into the car because the realtor has to show the house in an hour. Fun times.

But for AJ, absolutely necessary.

Tuesday, October 6, 2009


AJ's Experience Book: Things AJ does on a daily basis

Cute AJ & Getting Dressed

Brushing Teeth & Eating

Playing & Reading a Book

Bath Time & Drying Off


Colors EB

Black & Color Chart (for future games: ie matching jelly beans to the correct circle color)

Apples EB

2nd Theme for AJ's Preschool Classroom: Apples

Basket of Apples & Bite

Red Apple & Green Apple

Yellow Apple & Apple Tree

Apple Slices & Core and Stem

Apple Pie & Applesauce

Caramel Apples & AJ's Apple Juice

Wooden Apple Cutouts (using for counting 1,2,3 apples) & AJ collecting apples at school

Monday, October 5, 2009

Family EB

AJ's Family Experience Book:

Dog EB

In addition to making AJ experience books (EB) about himself and family, I thought I would make one for each of his class themes. The first theme for AJ's preschool class was dogs. They use certain vocabulary words each week and base most of their activities around the theme. I used those vocabulary words for each page subject. These books are time consuming to make, but are soooo well worth it. AJ loves them! Here is our first book about dogs (I just happened to have the perfect models for the job) :

Rocky (Shepherd) & Sunny (Lab)

Food-Eat/Water-Drink & Treats

Collar/Leash & Stay

AJ and Sunny & AJ and Rocky

Tail and Paw & Fetch

Sunday, October 4, 2009


AJ has been in school for a month already. I can't believe it. We also can't believe the tremendous progress he's made. There have been multiple days where I have picked him up after school and sat in shock. Shock as to how awesome his school is. Shocked at how much more awesome his teacher and her staff are. I mean we knew she was awesome, but seriously? Awesome! Shocked and thankful he is in this program. Many have said to us, I'm glad you fought to get him into Lowell. SO ARE WE. SO ARE WE.

This last month was a challenge for both us as parents and his teaching staff. It was hard to hear the reality that AJ is so far behind his peers. Its not as if we didn't know already, but it still stung. When it becomes unclear as to whether he will continue cognitively, fear sets in. It was hard to pick him up and hear he had a bad day. For some reason, we remember the bad days more than the good sometimes. Why is that? It's annoying!

We spent a few days worrying about it, and then tackled the challenge ahead full-on. Jer and I sat down and reviewed AJ's "testing scores" again, to familiarize ourselves with where he is, and to see what we need to work on. I pulled out my trusty white board and we wrote out goals for each area. We sorted his toys here at home. I raided the dollar bins (I know, again, SHOCKING!)and began doing activities that mirrored the theme of the week at school and created an easy flow from school to home. I organized the art bin and began making an list of things we could do each day, making sure to incorporate our goals.

At school, AJ seemed to be doing his usual thing with "new people". I mean new people that are handling him. He wet-noodles, won't listen, pushes buttons, throws tantrums, the works. Over time, he has become familiar with the routine at school, has shown anticipation as to what the next activity is (he knows!), he's more comfortable with the staff, has had a major decrease in tantrums, arching his back when upset, self-stimulation, crying, and the biggest of them ALL: he's transitioning from activity to activity much easier and doing much better with his peers.

I sat back on Friday and looked at a list I had started and sent to school with AJ earlier in the week. I wanted to share what I was seeing with AJ's teacher. He's shown me parallel ideas. Like, he climbed onto the platform swing at therapy the other day-which he's never done. I know he's been on the platform swing in the sensory room at school. He made that connection. On Thursday his teacher shared that they had been seeing the progress as well. He's making steps, although they are little, there is something everyday. I mean something every day. So, I've added to the list, since of course, he's added skills.

We still have a long way to go and are absolutely certain that he'll get there. To worry about it leads me down into a dark scary place that I absolutely hate. If he needs anyone in his corner, its Jer and I. We need to be his advocates and say HE CAN DO. Why should his special needs automatically place limitations on him? I think not! Now, us aknowledging that he has a long way to go is not me saying I don't care about the gains he's made over the last month. We are absolutely amazed at how well he has done in just a month at school! But there is always a goal before us.

Here is the list:
-Fantastic/more consistent eye contact, beginning to seek it out.
-Made some great eye contact with his orthotist at our appointment. AJ vocalized back to “C” when “C” was talking to him.
-Walked into clinic for AFO appt, AJ walked over to the school bus on the floor, actively began playing with it. Had interest in other toys in the waiting area.
-increased spontaneous vocalizations: with changes in pitch, voice quality, intensity, rate, and duration
-walked directly into therapy gym from waiting room, went to trampoline, then ball pit, then saw platform swing. Climbed onto platform swing, spent a few minutes there, climbed off on his own, back over to ball pit, climbed in pit by himself.
-able to climb up playground (both at home and the park) and push himself down the slide, get off slide, walk around, repeat
-using left hand to try and hold plate/stabilize the food so he can scoop/stab with spoon/fork
-while playing with puppy that sits and flips he turned the dog right-side-up after it flipped over and did not land correctly
-placed object in bin when asked “put it in”/he did this for me 5x, using both left and right hands
-Recognized bubble (Chris Barton) song instantly when sung, established eye contact with me!! I asked if he wanted bubbles and he kept starring at me, then starring at my hands as if to say ‘where are they?!’
-called his name, he turned and walked to me, purposefully dropped toy and climbed on couch for cuddle
-saw swings at the park from 10-15 feet away, began walking toward them
-Giving items “up” much easier/understanding ‘ALL DONE’ with ease, understanding when we say “no” to him playing with a non-toy (ie my cell phone). Gives up with ease and moves on to his own toys.
-Playing functionally with more toys
-Imitated clicking sticks tonight
-Did not imitate raspberries, but saw tongue movement and saw his tongue protrude forward 2x. Increased tongue movement during the activity.
-Walked over to yoga ball and tried to pull it out of corner, came to me for help
-Turning faster to novel toy sounds
-Listens to a sound (ie fire engine toy that is hidden behind me) and searches for it till he finds it, knows where the sound is coming from. *With toys he’s played with before. But he knows the shaker is different than the fire engine toy.
-understands auditory cues for “sit down”, “chair”, “wait”, “up”, “all done” and “bath”. “One more” is emerging quickly!
-We tried his tricycle for the first time. He immediately sat down and started backing up.
-Seems to be understanding/following directions much better. ie “No, lets go this way”, “Come here”, “Climb up”, etc.
-had a playdate with twin boys, 2 ½ on Friday. Walked into new space (their house) and had absolutely no problems. Found the stairs, went up to the playroom. Enjoyed the playroom. No major meltdowns. He took notice of the other Mom’s voice and was actively watching the boys. Here’s the best part: AJ found a farm animal puzzle and started playing with it. I mean playing, he took a piece out, then another, then another. Then paused, then picked up the cow and starting moving it around to see where it fit. One of the boys came over and sat right next to AJ to play with the same puzzle. I’m holding my breath thinking about the water/washing dogs incident….AJ gently reaches out for the puzzle piece “C” has. I say “No, no, “C” has that piece,” or something along those lines, and he puts his hand down. He reaches out again for a different piece, I say something again, he puts his hand down. I reached down to get a piece that was in front of him and he whined thinking I was taking it away, but he was fine when I gave it to him and said “Here’s a piece for AJ,” or whatever I said. He did so great! They even ate lunch together at the table. I was so proud.
-Recognized piggy bank/coin toy at playdate and looked around for coins to put into the toy. Tried to place plastic cookie in toy, when that did not work, he searched for coins. He even opened it up to look inside. No coins. Moved on to different toy, but I was amazed he knew what to do with it and moved on when there were no coins.
-Actively played with me doing an 8-piece chunky shapes puzzle.
-Placed toothbrush under water in-between brushing (he’s never done that before), then placed hands under running water after brushing his teeth to wash his hands (again, a new thing).
-Enjoyed a red-delicious apple. Would not bite the whole apple, but did enjoy the pieces w/out skin.
-Although he seems tired at the end of his school day, he is not napping until 3pm most days now. When we first began school he was napping earlier, but even on days with PT/Speech and then PT/OT later outside of school, he’s still not napping until then.
-Figured out how to back-up on his tricycle all on his own. Repeated during PT at school on a riding toy, surprising the staff
-Steady decrease in tantrums, crying, and rough transitions at school!
-Responded to point-cue when playing with hammer & ball toy, pounded ball with hammer when his teacher pointed to the ball. Played with peer and teacher during this activity.
-Played at water table with peer at school today!
-Long periods of eye contact over the last few days
-Playing in the hallway, heard me turn on the water in the bathtub, stopped playing, looked up at me while listening, came into bathroom for bath. Water/tub was NOT in his line of sight.
-Major increase in eye contact with Jer or I while he’s in the bathtub.
-Noticing when his CI has fallen off and he all of a sudden can’t hear things!!!!!
-When his teacher took a cup and tapped it on the table with the cue “tap, tap, tap”, he took the cup and repeated the action
-Walked up the steps in front of school, using lower railing, all by himself. 6 average steps, but very long steps (take about AJ 4-6 paces to get to the next step up)
-Watching the TV more and more, realizing that sound comes from it-watching people talk.
-Attempted to get into ball pit at therapy on his own, could not, turned around and asked PT for help by establishing eye contact pulling up her arms
-Enjoyed new therapy tool-swinging bolster. Fantastic eye contact and communicative intent with the PT that was working with him, as well as his OT and Mom while we were in front on him. It was almost like he was saying, “Look at me!” with his eyes/facial expressions.
-Bit and chewed a crouton
-Chewed grapes instead of swallowing whole
-Gathering/Carrying multiple items in his hands, able to carry 2 or more objects in EITHER hand
-Increased use of left hand, especially during eating and gathering of toys
-Better balance while dressing in standing
-Tolerates new left hand splint just fine
-Seems to understand the purpose of taking turns vocalizing with the flashlight (used like a microphone-turn on when you vocalize, off when you don’t). More “attempts” to vocalize on AJ’s part rather than just constantly shoving the flashlight at me to vocalize. You can see the wheels turning.

Saturday, October 3, 2009

Friday Night Lights

So, I happened to be in the clearance aisle at Michaels. I know, SHOCKING. I spotted these glow sticks/braclets that I thought would be fun for AJ. I pulled them out at a perfect time as AJ's been in this mode of collecting things and trying to carry 872 things at once. It's quite cute, funny, and is yet another cognitive gain. So we turned out the lights and played with the glow sticks last night. He quickly figured out how to gather all of them in one hand. We had lots of language going on, as we were counting and saying the colors. There was enough light from the glow sticks for us to see his face, so why not throw some auditory work in there?! At $1 for a tube of 15 (of which we only used 1/2), they made for a very fun Friday Night.

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