One Small Step!! Yay!!!!

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Liam had his first day of school this past Wednesday. He only goes Mondays and Wednesdays, but will eventually be bumped up to Fridays as well. I'm a little anxious to add the Fridays because I think he really needs the extra help. The more we can give him now, the better.

One thing they really worked on with him is keeping his hearing aids in. This is not a new problem. I've shared it lots of times in the past, but it has gotten much worse. He will not leave the blasted things alone for more than thirty seconds. When I went to pick him up, his audiologist mentioned that they'd had some success using a bonnet to keep the aids in his ears. (Apparently he wore the teachers out refusing to keep them in. Ummm...I guess I won't say I told you so.)

The bonnet reminded me that we have the hannah andersson pilot cap from last year. I knew right where it was, so I pulled it out for him. Voila! A good twenty minutes with the aids in. The really exciting part?! FOR THE FIRST TIME IN HIS LITTLE LIFE, HE TURNED WHEN I SAID HIS NAME!!! I didn't have to yell it, stomp on the floor, flash the lights, wave my hands, or stand on my head while sending him morse code smoke signals. He just turned.

The hat isn't quite the right size. He is able to get his naughty little fingers up in there and take out the aids, but some of my amazing friends are working on a cap that does the same thing, but is bigger to prevent him from attacking the aids. (Little stinker!)

Anyway, I made a video so the girls who are working on this project could see just what I meant. As you can see, he's doing great! He's so happy, and is finally trying to interact a little bit with us. You can also see that he's learned to clap for himself. This is a very new thing, and it's wonderful for him. He does something he thinks is good and then claps while looking to us for validation. If he made a good choice, we clap back. If not, he gets the "grumpy" look and a big NO. He hasn't quite figured out that it's negative feedback sometimes, but the fact that he wants any feedback from other humans at all is huge.

Liam's IFSP

Liam had his IFSP this past week. He had one right before we moved from TX, but a new one needed to be done since we've moved to a new state. We were prepared for that before we moved, so it didn't bother me to make the time to do. We also had an IFSP for Drezden, but there isn't a whole lot to say on that one. I will say that setting up services for two children on the same day really does make for a marathon meeting.

It's hard for me to acknowledge that I like this state better than TX because my heart will always belong to our team back there. The services offered here are more vast and more easily accessible in my opinion. That said, the bonds we had with our workers in TX can never be replaced, and there is something to be said about having close bonds with the people serving your children.

As far as what Liam will be receiving, I am very pleased with what is being offered. He'll be getting the following services:
OT 1 x week ( Therapist to be determined)
Nutrition 2 x month
Special Instruction - 1 x month home with Betsy and 1 x month 30 min at the center
Preschool class 2 days per week
Audiology
Speech Therapy every other week ( therapist to be determined)

The OT will be for his eating issues and to help him overcome his sensory issues, particularly with foods.
His nutritionist will be coming to make sure he's getting the right kinds of foods and nutrients he needs since he still doesn't do so hot with solids.
The special instruction will be given with an educator of the Deaf from the Moog school location in our area. This was actually an area of contention because the Deaf school wanted us to come to them once a week for the instruction, but first steps wanted everything done at home. They compromised for now, but I think it won't last long. I'm pretty sure the school is going to win, and I'll have to go to them once a week. It makes my schedule really sketchy, but is better for Liam. I have some mixed feelings in that area.
The preschool class twice a week is also at the Deaf school. I'm concerned that it's not enough, so the plan is to revisit his needs in a couple of months after they've had time to teach him how to get the most out of his class. I'm hoping we move to three days sooner than later.
Audiology will include all hearing testing, repairing his aids, earmolds, maintanance, etc. This is a HUGE help to us financially. Knowing we don't need to worry about his audiology makes it okay for us to take a huge sigh of relief in other areas.
I'm not fully understanding what the speech therapy will be for. He gets speech at the Deaf school, so I'm hoping the two go hand in hand. I do know he'll be getting his sign language skills from the speech teacher.

So, there you go. Nothing fancy, and no deep thoughts today. It's all just pretty black and white. We'll see how things go. I am pretty sure we'll be making changes as we go along, but overall I'm pleased with the efforts being made in Liam's behalf.

I've Died and Gone to IEP Heaven

I had CJ's IEP yesterday. He's a transfer student, so it had to happen pretty early in the school year. I went in ready for a huge fight and gearing up to come away black and blue from beating my head into a brick wall. I even had Kristi, CJ's old DeafEd. teacher with me on speaker phone.

They listened intently to Kristi's input. They took interest in my concerns. They took lots of notes. Then it happened. They came to the part of the meeting where they tell me everything they were prepared to offer him. You have to remember that he was dismissed from all speech services because his articulation was too good. He was offered only 45 minutes a week of services with Kristi because "we know he hears us". OT services were continually denied because "we know he has sensory integration needs, but it's not academically necessary for us to address them". With all that in mind, I was prepared to hear a whole lot of hot air and be frustrated. In the past, I've even had Kristi telling the district what CJ needed and it still was shot down.

"We never dismiss our Deaf students from speech. He'll be working on everything from articulation to auditory training on a regular basis. He will have regular access to our speech teacher, who's office is right across the hall from his classroom. We will provide him with a new FM system, and will replace it every three years for him. We will provide his teacher with training and tools to better prepare her to teach CJ. We will be teaching him 25 new signs per quarter, and we will work to have them be signs that go with new vocabulary he's learning in class. We will be getting all classroom vocabulary in advance and work with him on processing their meanings. We will be offering him extended school year, during which time he will receive further auditory training, extra vocabulary, and anything else he'll need to prepare him for the following school year. Lastly, we will be evaluating him and prepared to provide him with the OT services needed to help him with his sensory processing issues".
Yep. All of that. I didn't have to beg, plea, cry, throw things, threaten, or stand on the table screaming. They just offered it. In the words of Kristi, I've died and gone to IEP Heaven.

Liam's New School

Liam and me at the local zoo this past weekend. He was more interested in the animals than looking at the camera.

We haven't had Liam's IFSP yet, but all of his testing is done. Before we moved here, we learned about a school in our area. I did a little research into our options and agreed that the site closest to us would be a good place to send him to, but wanted to be sure we checked it out first. It's the same place CJ went to get his testing and educational recommendations, which our school district will be honoring and implementing.

When we visited, we spoke with the director and asked lots of questions. There are some things about it I'm not 100% sure about, but nothing that counts as a deal breaker for us. The school is oral only, and I believe in signing with all my children. They assured me that we could still sign with him, but not at school. That seems fair enough.

Liam will be receiving a lot of amazing services at the school. They are:

*all audiology services until three years of age including aids, testing, ear molds, critter clips, etc.

*seeing his own audiologist at the center 90 minutes a month

*one on one instruction with an educator of the Deaf

*a teacher to follow him around making sure his hearing aids stay in (a HUGE problem for us)

*speech services

*auditory training

*possible continuing services at the same school when he turns three paid for by our school district if it's deemed necessary for him (which it more than likely will be)

We'll be starting out with him going just two mornings a week and then move up to three mornings a week as soon as he's ready and shows compliance. I'm hoping that's before Christmas. I really believe this will be the best thing for him.

It's so vastly different from the way we did ECI in Texas. We were so happy there, and I was pleased with the progress he was making in most areas. Making the decision to do things this way once we got here was a hard one, but I think will have the most positive outcome. He'll still be having some services at home through the state early intervention program. He'll have an OT that comes to work on his oral sensory issues, a speech teacher, a teacher of the Deaf to teach him sign language, and a dietician to follow his eating habits. All in all, a very good plan for him...I think.

School Has Started!

First day of school pictures. He's so proud of his Toy Story clothes, backpack, and lunchbox.

One of the scariest parts of moving when you have a kid under the special ed. umbrella is the fact that you always have to wonder if the new school district will be able to meet your child's needs as well as the old one did. Then there's the part of you that hopes that the new district will be even better than the old district was.

It seems that we may have hit the jackpot and managed to get CJ into a system that is more equipped and prepared for children like him. What luck!!! After a conversation I had today with his soon-to-be Deaf Ed. teacher, I am really breathing easy.

I walked in to drop him off on the first day of school and mentioned to his teacher that he hadn't been ARDed yet, so there was no FM system ordered for him. "Not a problem. They're coming today to bring him an FM." Wow!! Many of you may remember the battle we had when CJ started Head Start and the FM was nowhere to be found...for weeks!

In addition to that, his teacher made a point to call me ahead of time and seek out my input regarding what he'd need in the classroom. She admits that she's never taught a Deaf student before. I let her know that was fine. I've never parented a Deaf child before CJ, either, but we seem to be doing okay so far. She seems very opened to learning how to work with CJ and insure success for him.

As we were talking, I described some of his wacky sensory issues. "Why hasn't he had an OT working with him?". "Well, our last school said it wasn't academically necessary". "Okay, we'll have the OT and the PT come observe him and decide what they think." Really?? Services being offered (even suggested!) without a fight?? Someone pinch me.

Today I got a call from his Deaf Ed. teacher. She is already on the job with him. She went and visited with him today, provided his teacher with lots of valuable information, set him up with his FM, ordered his IEP meeting, and made contact with me to inquire about what we'd be needing for him. Again, WOW!!!

We took CJ to the oral Deaf school in the area right when we moved here so he could be tested. They found a few issues with him.

*He is developing a lispy sound when he tries to say [s]

*His expressive skills outweigh his receptive, so he easily fools you into believing he understands everything you say.

*When he doesn't really hear something the right way, he just chooses another word that sounds similar and assumes that's the word you meant.

*He needs some work on his auditory processing.

While I appreciated the testing and the suggestions, I knew I was in for an uphill battle getting the school to implement those suggestions. When his teacher called today, she said "I've also looked over his testing from (the school), and have contacted the speech department to implement their suggestions. I'll be conducting the rest of the needed work for him". I was shocked, almost speechless. (Almost, people. Don't get all shocked that I was at a loss for words.)

So, there you have it. We are three days into first grade, and things are going well. I think we are in a place that is fully prepared to work with him and help him succeed. What luck!

Finally Moved and Ready to Blog Again

There are so many updates to post about, but I'm a little bit limited on time. I will be posting at least once a day for the next little while as I try to get caught up. Hopefully that will start a new habit, and I'll be more consistant like I used to be. While you wait on those fun updates, here are a few exciting points to note.

*Our new school district is on top of things that CJ already has been given his own FM system even though we haven't done his ARD.
*CJ was tested by the oral school for the Deaf, and our district is going to honor all of their recommendations. He'll be getting speech (finally!), itinerant services, sign language instruction, and more.
*Liam will be going two to three mornings a week to the oral school paid for by the state.
*CJ's sensory integration issues are finally going to be addressed.
*There are a few other Deaf children at church, and CJ has become friends with one of them.

I'll be back very soon to address all of those things little by little. There are so many happy updates to report that I don't want to miss a thing.

Bittersweet Blessings

Moving has proven to be more heart wrenching for me than I expected it to be. There are just so many things here that I am very attached to, and leaving those things behind is traumatic. I am very bonded and completely trust our ECI team. They are AMAZING people and have been the glue that's held me together more times than I can count.

We sat down today as a team to work on Liam and Drezden's plans for when we move. The new state has already said Liam will be able to attend an excellent program for kids 18 months and up who are hearing impaired three mornings a week. It's a HUGE blessing, but my heart doesn't even want it. I don't want someone else to take charge of teaching him, even though I know it's what is best for him. And, more than anything else, I don't want someone else in charge of my kids' services. We've had the same service coordinator since CJ was about seven weeks old. That's nearly seven years now. While building friendships with clients is very frowned on, seven years of being someone's rock has led to a great friendship with her. I can't even breathe when I talk about leaving and not taking Jo with us.

As we were working through Liam and Drezden's plans and acknowledging that all this hard work and planning will probably be put on the backburner anyway, I just sort of lost it. I'm so not ready to trust anyone else with these precious children. I know we're going to be so blessed for moving, especially in this aspect. I just had that the blessings have to be so bittersweet.

Don't Touch That!! (Again!)

I'm pretty sure Liam is going to be my dare devil child. CJ was always very curious, too, and could get out of just about anything. This is a different kind of daring that I see in Liam, though. His is the kind that ends him up in the ER frequently. Isn't there some sort of speedpass parents can get for when they have children like mine who consider ER doctors and nurses to be like some sort of extended family?

We had a lovely 4th of July dinner of hamburgers cooked on the grill. Since we're in a tiny little apartment, we just have a tiny little grill. It's one of those $20 ones you can get at Wal Mart. Not even a little bit fancy. It stands about a foot and a half tall, cooks about 6 burgers at a time, and just does its job and nothing more.

After finishing eating, CJ decided he wanted to eat his cupcake on the patio. No big deal, right? Well, it shouldn't have been, but he forgot to close the door behind him and Liam toddled right on out the door. Because he's the most inquisitive and accident prone child ever to walk the earth, Liam had to make a bee line to the still hot grill.

Byron and I saw it happening, and it was one of those Twilight Zone moments where everything happens in slow motion. I dropped everything and flew out to him, but it still wasn't fast enough. Both hands and one fore arm had already touched the grill.

I quickly took him to the Acute Kids Urgent Care that was down the street and they sent him on to the Children's ER in Plano. The ER at Children's decided he needed to go to the ER in Dallas. ARE YOU KIDDING ME?!?! We all know how I feel about Children's of Dallas.

I fought and argued and disagreed with them. These burns aren't nearly as bad as the one he got a few months back. I knew he was fine, but they were adament that he needed to go. They wanted to send him via ambulance, but I put my foot down. No. Way. Is. He. Going. On. Your. Ambulance. He wasn't crying in pain, the burns were not above second degree, the swelling had slowed down significantly, and there was no reason to justify such insane measures. The doctor in Plano insisted that the swelling could get worse and he could lose his fingers. ARE YOU KIDDING ME?!?! Really, this wasn't half the burn he'd gotten last time. Really.

I finally relented and agreed to take him myself to Children's of Dallas so the burn people could look at it and tell me he was fine and just needed silvadene and treatment with the pediatrician. I also said they'd have less than 30 minutes to get him into a room of his own away from other sick children before I'd take him and leave. In my mind, the risks of being there far outweigh the benefits when you consider his health. They did do well. I'll give them that. He had his own room within ten minutes of arriving. That's all they did well in, but at least he was in his own space.

It took an hour or so for the burn specialists to come in. They took a few minutes to look at him and the conversation went something like this:

"How did this happen?" I told them the story.
"How many kids do you have?"
"Five"
"And, what do you think needs to be done here?"
"I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened".
"You clearly know what you're doing, and don't need to be here. Let's get him ready to go home".

Finally!! Someone who was reasonable enough to realize that I can parent my child AND that he didn't need to be in that nasty ER. That's where it ended, though. Apparently a child can't be sent home until a regular doctor sees him. Really?!?!? He's there for a burn so shouldn't it suffice that the burn doctor saw him and said he could go home?

Well, it was the 4th of July. It was getting late. Accidents started happening and the ER was filling up (which is why I didn't want to go there in the first place, but what do I know? I'm just the mom). Anyway, we waited and waited and waited. Finally a "doctor" came in who had psychology on her pretty white jacket. Great. They sent my kid a shrink because that's all that was available?? Really, I was ready to go home. Couldn't they just dress it and send us on his way? This is how the conversation with her went:

"Can you tell me what happened?" I told the story.
"I need a medical history. Does he have any history of illness?"
"He has a pre-disposition for C-Diff."
"What's that?"
SERIOUSLY? ARE YOU KIDDING ME?!?!?! At this point, I knew expaining NEHI would be more than a challenge, so I just dumbed it down for her so she'd understand.
"Does he need bloodwork do you think?"
"No, he's here for a burn."
"Any fever?"
"No, he's here for a burn."
"Any fever or coughing?"
"No, he's here for a burn."
"What do you think needs to be done here?"
"I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened".
"Hmmm...let me go ask someone what we need to do".
"Ok, but can you make it quick? The specialist said he's good to go, but we need you to sign it off."
"Any sign of ear ache or anything?"
"No, he's here for a burn."

Yeah. It went that well. I'm not even exaggerating. I HATE that ER. (I think I've mentioned that before, though).

Anyway, we finally got to leave around 3am. I got home around 3:30 and had a total of three hours' sleep before having to get up and take him to the pediatrician who was only opened half a day that day.

Our doctor took one look and said, "They wanted to ambulance him for THAT?" He laughed. What did he do? He applied silvadene, dressed the wound, and asked us to come back tomorrow so he can treat the wound, debride the blisters that are open, and watch for signs of infection. Hmmmm...what a gret idea. Wish I'd thought of that.

Ding-A-Ling

CJ finally had his ARD last week. I'd been asking for it for a while, but there was a glitch in the system, and the school thought it'd already been done.



There isn't really much to be said about it (which is a good thing really!), but I had yet another embarrassing moment that (as usual) needed to be blogged. I thought I was really smart because I had a friend watch my four oldest kids for the ARD. I kept Liam with me. As usual, Liam felt the need to completely disassemble the meeting room. There was literally nothing he didn't touch, so I assumed he was the reason I couldn't find my phone when the meeting was done.



I had heard my text message alert go off once during the meeting, but ignored it to focus on the discussion. I KNEW because of that moment that the phone was in the meeting room. It wasn't in the diaper bag and I had no pockets. Everyone was flipping things over, looking under and inside of everything they could find. The phone was nowhere to be found.



Finally, I asked our Deaf Ed. teacher to just dial my phone so we could find it when it rang. Still, everyone kept looking while we waited for it to ring. Finally, after about 30 seconds (and just when MR. TRAW THE PRINCIPLE was standing right next to me), my bra began ringing. Nice.

Our Kindergarten Graduate!

Our Graduate
CJ and Jim, his bestest buddy EVER

CJ and Mrs. Cowart, who might very well be a saint.

CJ with Mom and Dad

Showing off his cowboy boots, which he wears every day on the wrong feet with his pants on backwards...or shorts in this case.

By some miracle, CJ survived a full year of Kindergarten. He knows more about reading, more about counting, more about sharing, more about practicing self-control, more about teamwork, and a lot more about how to drive a teacher completely bonkers.

Yesterday was his Kindergarten graduation, and he was so proud of himself. His buddy, Jim, came just in time to see him march in with his class. Being the CJ that he is, he did a goofy little dance when he saw us, and then held up the line long enough to ask what was for lunch. Figures. Silly kid.

He proudly sang the three songs they've been practicing. I felt like I already knew those songs because he's been singing them around the house for a few weeks now. When his name was called, he shook his teacher's hand and then Mr. Traw (the principal) and Ms. Dowell (assistant principal) with great pride.

After the ceremony, we followed him to his classroom for pictures. He was so excited to show Jim his stylin' cowboy boots. He wears those boots every single day. Usually on the wrong feet, but who is counting?

So, now we move on to our new school. I don't know that we'll ever find another teacher as amazing as Mrs. Cowart was. She was always fair and firm and loving with CJ. It takes a special person to make as much of a difference in his life as she has.