Saturday, September 25, 2010

Liam and His Hat

I have only wonderful updates on my sweet Liam, and I'm so delighted to share them. The combination of him having his pilot cap and attending his new school has made for leaps and bounds progress for him.
The biggest, most important, thing I need to say is a huge THANK YOU to my friend, Kadee. She worked tirelessly to create this cap for Liam. She, another friend, and I are working on tweeking it a little bit to make it adjustable for each individual child's needs. For Liam, having this cap is an important key to keeping his hearing aids in. In addition to the cap, the time he's spending at school being required to keep his hearing aids in is leading to great things.
1. Liam has learned to try to engage others in seeking their attention. When he is in his high chair, he has discovered that he can make a silly face to cause us to laugh. He's so proud of himself!
2. He has begun to experiment with sound. I have a stainless steel mixing bowl that he has basically adopted as his own. Initially, he just liked it because I showed him how to spin a ball in it. He noticed that he could hear the ball spinning (it was a hard plastic ball with tiny beads inside it that rattle) in the bowl and began going out of his way to clang it against the bowl. While he was wearing his hearing aids because he had his cap on, he noticed that different items make varying sounds against the edge of his bowl. He goes out of his way to find other items to clang against the edges. So far he's tried a wooden hammer from our block set, a Thomas the Tank Engine toy, a chocolate bar wrapper (which he was less than impressed with), a shoe, and some silverware.
3. Liam has noticed that sound comes out of the television. The other day he was having speech services here at the house and Rachel turned on Dora the Explorer behind him. He was so distracted by the sudden sound he was hearing that he just couldn't focus any further on his speech lesson. I never thought I'd be so delighted to see my child distracted by the television.
4. He has clearly been practicing in the sound booth at school. Part of the conditioning for hearing tests is to have a child hold a piece of a ring stacker to his ear and wait for the sound. When he hears the sound, he puts the ring on the stacker. This, of course, leads to great applause. Liam now walks around the house holding toys to his ear apparently waiting for the sound to happen.
So, we're making progress. It's not even slow progress, but sudden and rapid. We love this child more than life itself and are so thrilled to see wonderful things happening for him. It's as though he's suddenly woken up to the world around him.

Friday, September 17, 2010

Fun Liam Updates

Liam started his new school last week. In addition to that, he's been working a bit with his speech therapist provided by early intervention. I'm excited to report the following fun updates on him:

1. The speech therapist noticed that Liam is occasionally moving his mouth without making sounds. I know this sounds silly, but this is a good thing. It shows that he knows communication has something to do with the mouth.

2. When a toy is taken away from him or someone walks away before he's done playing with them, he will cry. This is a totally new behavior for him. He has never used crying as a means of communication before.

3. Liam is learning to be conditioned for hearing tests in a sound booth. Good conditioning has resulted in a really good hearing test for him. We know now that we do have the right hearing aids for him. His next sound booth hearing test will be aided, so we'll start to determine if he's gaining benefit from his aids.

4. Liam has repeatedly turned his head when someone called his name while he was wearing his hearing aids. This is a fantastic sign that he's gaining benefit from the aids.

Overall, I'm pleased. We still have a very long road ahead of us to help him catch up, but that road is getting shorter and shorter with each day that passes. Way to go, Liam!

CJ Has a Friend!!

This is a really big deal for us, although it seems like just a typical day for any other parent of a seven year old little boy. Other parents aren't raising my seven year old little boy, so I don't expect them to fully understand.

CJ has always played very well with children younger than him. He loves playing with Rachel's friends best. He also really enjoys older people and adults. It's impossible to forget that his very favorite person on the planet is a cowboy who could be his grandpa. For whatever reason, his comfort zone has always been with people who aren't his age.

Part of CJ's biggest problem is that he struggles with relating to peers his age. Socially, he has always been just a little bit behind other kids his age. He doesn't tend to understand how to play with them or make-believe like they do. His interests are just different. Partly, it's because he isn't as confident in his gross motor skills. Playing running or jumping games is hard for him. Bike riding is next to impossible. This all goes back to his issues with a damaged vestibular system making it difficult for him to know where he is in space. Some of it is because he can't hear their voices or understand their speech as well as he understands adult speech. Adults recognize his hearing loss and are able slow down and articulate better for him.

It's been a long road for CJ when it comes to friendshipping. Finally, I'm really excited to report that we're making enormous progress. Our new neighborhood is full of children, some from church and some his own age. There are two little boys in particular. G is the younger brother of T, a friend of Aiden's. G is a year younger than CJ and likes to play with Rachel, but also is learning to get along well with CJ. Then there is L. L is the same age as CJ and in the same grade. He has twin sisters that are in kindergarten and love to play with Rachel. L comes over frequently to play Toy Story 3 or jump in the bounce house with CJ. He cries when his mom tells him it's time to go home.

Did I make that clear? Another child the same age as CJ wants to play with him and cries when it's time to go home. This is no small miracle for us. We are so delighted to see him laughing, playing, learning, and enjoying being around other children the same age as him. He finally knows what it feels like to have a friend that wants to play with him. That's a gift no child should ever live without.

Friday, September 10, 2010

One Small Step!! Yay!!!!


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.

Sunday, September 5, 2010

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
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.