C's Parent Teacher Conference

We have been beyond happy with Conner's pre-k teachers this year. They really seem to get him and are teaching him so very much. His first conference of the year went very well so I was hoping for more of the same. The conferences are only 15 minutes long which is not much time to talk about all that C has going on. So the time before mine was not taken so the teacher let me come a little early...when I was there, the person after me was a no show too, so I got about 45 minutes of time which was great. 

So, socially, Conner does very well (even though he tells me he doesn't have any friends at school...apparently that is common). He plays with many different kids and the kids are kind to him and take time to listen to everything he wants to say. He loves the morning meeting which is a time for the kids to talk and share information. His stuttering has been much better the last week and a half and that makes life/school a little easier for him. As we have seen so many times, it's really a cycle so I hope that it will continue to improve and I dread the day that it gets worse. The teachers have definitely noticed a difference. 

Conner struggles hugely with certain self-care and necessary tasks. He has trouble with his shoes, boots and snow pants and he can't zip his coat.. He is stubborn and it's hard for him so he is very resistant. It's frustrating that at times he won't even try even though I know how much he can do. He does fine with the bathroom mostly because his pants are either elastic waste or his jeans are so big that he can pull them up easily. I'm hoping this stuff will get easier but it's a very difficult battle to fight with him. Now we are talking about adding braces to his feet...getting shoes on is going to be torture. 

Handwriting is difficult but coming along and the teachers stressed to me that although handwriting used to be a big gauge for how kids are doing in school, teachers now know that there are many other things that determine intelligence. They have told me that Conner is very smart and that although some skills are challenging, that cognitively, he is doing really great. He thinks abstractly when necessary and really is getting some difficult concepts. His favorite things in school are story time, media (library), science and playing. He HATES handwriting at school. So it is challenging. 

Overall, it was a really great conference and I'm hoping that the skills that C has learned will continue on as he gets ready for kindergarten next year. 

March 27, 2013 - Update

Lots going on around here and we have been pretty busy. C's schedule is crazy as always and B is adding a few of her own things to the mix. I have been terrible about taking pictures with the camera lately, but I have a ton on my phone that I have to get uploaded.

A few weeks ago, C started a few new activities to add to his normal days. He started swim lessons at this amazing place called Aqua Tots. We tried it out one day when The Friendship Circle was doing free classes and they were so good with him. They felt that he would be fine in a group lesson (the only way we can afford lessons) so we gave them a try. Backing up, Conner has been pretty terrified of the water, even though he has taken many swim lessons so I was thrilled that he was so excited about getting in the pool. Most of the lessons are great, although the progress is VERY slow. The biggest problem for Conner is the breathing and holding his breath under water (oh, and floating on his back). Always having trouble with breathing. Anyway, it has gotten a little better over the weeks. The problem is that many of the kids are moving up to the next level, but Conner has a long way to go, so the kids in his class are getting younger and younger. I feel like they might make us start doing private lessons pretty soon which is pretty cost prohibitive for us, so we are just trying to get as much from this as possible. I have definitely seen progress and we have figured out some ways to get him to put his head in the water so we are happy. Water in his ears drives C crazy and that is pretty hard to prevent under water. He refuses to wear ear plugs so we ended up buying him an ear wrap (a waterproof ear cover - like a headband). So far, so good. He is now able to float on his back much much better.

C also started 2 OT classes, Eye Spy and Handwriting. Eye Spy works a lot on strengthening eye muscles and hand eye coordination. Handwriting is just a basic first handwriting class. Both classes have 3 kids, 2 girls and Conner...which is right up his alley!, and very strange for therapy classes because normally they are all boys. Anyway, he is really enjoying them and loves doing "therapy type" activities with friends instead of all by himself. He has also been on a little break from OT because our insurance isn't so great this year so these classes are helping with that a lot. We just started back last week and are SO happy to have our awesome OT back.

B started gymnastics classes 2 weeks ago. We won a free class at a fundraiser a few months ago and this is a perfect way for us to try it out. I go with her and so far it's okay. She seems excited about going but is so shy around the teacher and other kids that she really won't follow along with the routine. Maybe it will just take some getting used to. She still loves going to the gym playroom and I would love to get her in to their preschool class but it's full at the moment. When this little girl gets older, I'm pretty sure she will get a big kick out of dance class.

Still deciding what to do this summer for both kids. Lots of stuff up in the air right now and there are not too many options at this point. We do need something for sure. Only thing for certain is a long weekend trip up north with The Friendship Circle that we have been looking forward to all year.

March 8, 2013 - B turns 2!

So hard to believe that B turned 2. I say it all the time, but really the time does fly by. She went in for her 2 year check up and her stats are same as usual:

Weight: 28 lbs (75%ile)
Height: 34 inches (50%ile

She is about the same weight as Conner at his 3 year appointment. She doesn't seem huge though, just your average kid.  At her annual exam, the pediatrician asked lots of questions but not anywhere as in depth as I remember the first go around with C. The one thing she did harp on was to give B more vegetables and less "snacks". B doesn't eat a ton of junk...but she likes to snack. She likes squeezy pouches of any kind of sauce (I usually get the kind that have some kind of fruit/veggie mix), yogurt raisins, pretzels, veggie straws, fruit. Nothing I consider that bad. But her pediatrician would like her to be only offered vegetables for snacks. I did mention that she is pickier with foods but it's really not that bad. She has started to try more things and really likes salad all of a sudden. I feel like this might be the first time that I am defying my doctor (such a rebel, I know!) because I don't like peas, I'm not going to give them to B for a snack every day. I feel like she is too young to not give food just because she doesn't like what I make. We try to mostly do healthy foods at home and she really is starting to try more things...but when she doesn't want something, you know it. She gives a terrible face and will hand it right back. B's favorite foods are yogurt (she LOVES some Chobani...LOVES), fruit, and sushi (she likes the soup, salad, edamame and california rolls). She's getting more adventurous!

B is doing great at school. She takes a bit to warm up every morning, but she is happy there and enjoys it. We are so glad to have found a good place for her for the rest of this school year. She loves the arts and crafts projects and music the most, at least that is what we think from the information we get. She was lucky to get to celebrate her 2nd birthday at school with her new friends.

B loves being read to and her most favorite books are all the Pinkalicious stories. I have no idea why or if she really "gets" them, but at nap and bedtime, we must read at least one of them. She loves singing time too and her favorite song is "Row Row Row Your Boat". I love hearing her sing along to "Down By The Bay" and "You Are My Sunshine". Her little voice is so cute. She doesn't sing all the words...just the ends of the phrases, but so cute! She also lately must pick out a blanket for bed/nap and it's different every time. She has a bunch of baby blankets and she picks from the ones in the basket on her changing table. She sleeps with tons of stuff and there is nothing we can do about it. She has 2 hippos she got for her first birthday that she won't sleep without, Minnie Mouse, Winnie the Pooh and an assorted bunch of other stuff. Sometimes there is hardly room for her.

We decided not to do a big party this year because B doesn't know a lot of kids her age and because she is pretty shy and we didn't want to do anything that would freak her out. So we just had dinner with family and it was perfect for her. We had pink balloons, a Pinkalicious cake and pink cupcake shaped cookies (from the book).

At 2, B's favorite toys are probably her babies, a favorite hand me down stroller/car seat, and anything for the baby. She also likes Conner's toys...but only when he is home playing with them! She knows what she wants and has already started having some pretty good tantrums. She is pretty easy to redirect at this point, but I think she has the makings of a drama queen! She is such a fun, great kid and she LOVES her brother. She asks about him all day when he is at school. She is talking a lot more and although I have NO idea what normal is for her age, I think she is doing okay. She strings about 3 words together much of the time and she has tons of words. She isn't quite conversational, but she's getting there.

Overall, it was a great, low-key birthday for Brennan. It was a little emotional for me because I just can't believe how old she is getting. She is so grown up already!

Stuttering Sucks - February 6, 2013

What more can I say? Stuttering sucks. The actual disorder sucks. The way that it hurts my boy sucks. The way he has to work so hard to get every little thing out of himself sucks. The way that people look at people who stutter sucks. The teasing sucks. The way that some therapists don't know how to deal with stuttering sucks. The amount of hopelessness I feel when I think about it sucks. Every aspect about it sucks. That's about how I'm feeling right now about the whole thing. To have your child struggle is the worst thing and I feel helpless and frustrated. He gets so mad at us when we try to help. It's a constant battle.

According to the National Stuttering Association:

What Is Stuttering?

Stuttering is a communication disorder involving disruptions, or “disfluencies,” in a person’s speech. The word "stuttering" can be used to refer either to the specific speech disfluencies that are commonly seen in people who stutter or to the overall communication difficulty that people who stutter may experience.

In addition to producing disfluencies, people who stutter often experience physical tension and struggle in their speech muscles, as well as embarrassment, anxiety, and fear about speaking. Together, these symptoms can make it very difficult for people who stutter to say what they want to say, and to communicate effectively with others. There are, perhaps, as many different patterns of stuttering as there are people who stutter. There are many different degrees of stuttering, from mild to severe.

I have started reading up on the NSA (National Stuttering Association) for some help. Treatment for stuttering is a specialty. We have had therapists who don't know how to treat Conner. They can take guesses at what to do but they aren't experts. I think we are finally with the right therapist. She knows what she is talking about and I can tell she has the right tools. Now we have to try to get Conner to go along with it. It is harder than any other speech problem we have dealt with (and I feel like we have had a whole bunch of them, from severe expressive and receptive delay, dysphagia, dyspraxia, dysarthria, blah blah blah).  Therapy for stuttering is not fun. It is hard. It is harder for Conner than doing Physical Therapy. It involves a lot of practice with breathing and relaxation...hard to do with a hyper 5 year old. Conner has developed secondary characteristics which means basically that he doesn't just stutter with his words, his whole body is involved. He turns his head, catches his breath, tenses the veins in his neck, holds his ears, and it just keeps getting worse and worse.

When most people we know think of stuttering, they aren't thinking of what we deal with every day. Sometimes I think I should videotape Conner's struggles so that people can see how hard this is. I want everyone in the world to know that it's not his fault. That he is trying so hard and to please give him the time he needs to talk, to listen to every word that he says and to not stare or make fun of him. He is only 5 and he has been dealing with this problem for a while now. We have been told that this is way past a developmental problem, he is not outgrowing it, and it is getting worse week to week. Severe stuttering. That's what the paper says. Ugghh. He will likely have to learn ways to deal with this his whole life. I'm praying that some technique we figure out helps. As his stuttering gets worse, as parents we just feel more and more helpless. It's overwhelming. Just as things seem to get better, another big blow. That's how it feels. I often wonder why this, why does my little guy have to have one more thing to add to his load. Why is this another thing that he will have to work so hard to do. I know we are so lucky. Conner's teacher today told me that we are lucky that in spite of his difficulty talking, he continues to talk. He doesn't let it stop him. I know we are lucky that Conner is able to be in school and is learning. I just wish every little thing didn't have to be such a challenge. I'm having a pity party.  

If I had a penny for every time someone said to me that "he'll outgrow it", "he'll catch up", "he's going to be fine", "he's only 5", "my kid did the same thing and now they are fine", "oh, we had to do speech therapy too", I would be a millionaire and able to afford all of the therapy that Conner really needs.

I hope everyone I know is kind and teaches their kids to be kind. That's all.

The Little One Started School - February 5, 2013

So B deserves her own post. Because of all of C's "stuff", she seems to get less attention. I assure you that in real life, she is well cared for and gets tons of our time and attention. Just an example, our big boy goes to bed over 1 hour before her. Tonight he was tucked in to bed by 6:05. He is just that tired after a long day at school. Me and the little princess hung out for a good time playing with Minnie Mouse and building with blocks and legos. She is really just becoming such a cool kid.

B will be 23 months old at the end of this week. I know it seems early to start preschool and honestly I don't think David or I ever thought we would do it, but several factors came in to play and it just worked out. The first thing is that Tuesday and Thursdays are pretty busy for the big kid. We drive around everywhere and have tons of appointments. So B wasn't getting a ton of attention those mornings. She was either going to the gym nursery (which all of a sudden, the last month or so, she actually really likes) or just hanging out at home playing alone while David works - not so much stimulation.

The second thing is that we felt that she needed some socialization and playtime with kids her own age to learn how to share, play, etc. She is VERY attached to her older brother and doesn't like him to leave her side but he is going to be in school every day next year so she needs some other buddies to hang out with. I know that she won't be making her best friends when she barely talks, but at least she is being exposed to the idea of school and she is figuring out that there are other little people out there just like her!

B was sort of late in developing words. To David and I, she seemed just fine. We only had C to compare to and he didn't speak a word until he was 3. But my pediatrician was concerned because now we have a "family history" of speech disorders and we don't know if his problems are due to prematurity or genetics. So she got us in to Early Intervention very early. Honestly, it was earlier than I was comfortable with and I was a little upset at the time. I just didn't want to go through the whole speech thing with 2 kids. We know now that we will most likely be in speech therapy for many more years with C so I was a little hesitant to start B at 15 months. Anyway, we just get a lady from the county coming here every other month for an hour and she already told me that B is age appropriate now (at 23 months) and hopefully we will not have to do any more intervention. Before we went to Florida in November, we were keeping track of all of her words and got up to about 100. Then we went out of town and just quit keeping track because she was getting a ton every day. All of a sudden, after one day of preschool, she is stringing words together and so cute about it. She will say "please" after everything just to add that extra word. A few days ago, she bust out with "I love you" which just melts your heart (and she follows it up with a kiss and a great hug!). I know this may not seem like much to typical parents, but to David and me, it is amazing to watch her. Without any therapy, she is just learning. She figures things out easily. She is stacking blocks and loving books and it's a totally new experience.

The other issue with speech is C's dysfluency which is a post all its own. The Early Intervention lady was concerned that B would start to pick up some of his mannerisms and speech if he is the only kid she is around all the time. I know 2 year olds don't talk as much as older kids but we thought it would be a good idea to get her around lots of other people so she could hear lots of different voices talking. Who knows if it will matter or help, but we are doing what we think is best.

So she started preschool yesterday and is going 2 mornings a week. I took her in and I didn't cry or anything! She didn't cry either. I felt very comfortable leaving her there with the teachers that I know and trust. I am not concerned about what she is learning right now, just that she is safe and having a nice morning. They are giving her lunch too which is nice. B happens to be a very picky eater so it's nice to not worry about it for 2 days a week. Lunch is not a big meal for her either so hoping it will go okay. It's a totally different experience taking a typical kid to school compared to a kid with special needs (and maybe it was easier because she is the 2nd child too). I didn't have to explain anything, tell them anything special. I know that she can express her needs and wants without any problem. She can get her point across for sure. And she likes crafts and playing. I'm hoping it will be a great experience for her.

Accessories - January 4, 2013

So Conner had his annual eye doctor appointment yesterday. He has been seeing an eye doctor since he was a wee little babe...I think he probably weighed less than 2 pounds the first time his eyes were dilated. He used to get checked every week and gradually that has spaced out and now we only go once a year. The eye doctor we see is fair...I'm sure he is a great doctor but his bedside manner is not my favorite. Anyway, at least Conner doesn't mind him so much and sort of cooperates. So last year, he said Conner has an astigmatism in both eyes and will probably need glasses at some point. I filed that away thinking maybe when he was a responsible teenager. Well the appointment was going great yesterday. I was so impressed with how well Conner did. For the first time, he did the test with the letters, covering one eye, etc. I thought he could see just fine. The doctor said his eyes look great. The scar tissue and stuff from his eye surgeries way back when still look really good (which is always excellent news and so reassuring). I thought we were going to make a clean getaway. But then out it came..."I'm giving Conner a prescription."

I know lots of kids wear glasses and I know they will look cute on my little guy...I just know that he is NOT the picture of responsibility and he HATES things on his face. When we were trying out some different pairs, we could hardly keep them on him long enough to look in the mirror. The doctor (and David and I) are hoping he will have the rest of this school year and summer to adjust to them so that he won't have problems with them once he starts kindergarten.

This came just hours before PT. Conner has a great PT. He had the same therapist for a few years and we loved her but after taking a year off, started up at a different location and found a therapist that Conner loves just as much. Anyway, the therapist keeps bringing up the idea of some splints for Conner. We talk about it every week. We have also talked a bit about serial casting but the splints seem like her first choice. We have to start thinking seriously about it. It makes me sick. I wish we would have done it sooner. I wish I knew if they would help him at all. So next week, she is going to do some measurements and we are going to make a decision. I think.

Again, not a big deal but just another thing for Conner and us to keep track of. I'm going to try to think of them as his accessories. Like part of his outfit or something. I'm going to pray that kids are supportive for at least a few more years and Conner is spared from the mean-ness of school aged kids for a bit longer. I have already witnessed teasing that comes along with stuttering. It's not easy to explain to a 5 year old who wants to love everyone. I think it was just a hard day for me. One minute, I think everything is going great, Conner is making great progress, maybe some day he won't need as much therapy. And then 2 things in one day (and a couple hundred dollars later). We will do anything to help Conner achieve anything possible though so we will just keep plugging along. Today was a better day.

Happy 2013!

It's 2013. I haven't made a blog post in over 6 months. My last post was about preschool graduation for C. So much has changed and been going on since then. Not sure why I gave up updating. I should do a better job. I'm never going to remember all the stuff that has happened since then. Well, once again, I will try to start the year off right and do some regular updates so I can keep track of stuff.

Conner is a few weeks from being 5 1/2 years. Brennan is a few days from being 22 months. Crazy how fast time has flown by. Conner is repeating Pre-K at a new school and is really doing great. It's hard socially, making new friends all over again, but he is doing well in school and has 2 excellent teachers.

The last week and a half, Conner has been off school. I wish we could say we did something really exciting but we really haven't. Both kids have had colds the entire break. C did get to go to a few fun places, a few movies, a Children's Museum and an arcade a few times. He really does so much better in a routine and staying busy so breaks are hard on him. He still had his therapies so at least that stayed the same.

As for little Miss B, she has been doing good. She has good days and bad. She's VERY picky and has an opinion about everything. Even without so much talking, she still gets across what she wants.

In 2012, we took a trip to Mackinac Island, Grand Rapids and another road trip to Florida (to Disney). We met Laurie Berkner (used to be one of Conner's favorite singers!), raised almost $4000 for The Friendship Circle of Michigan, participated in Dance Marathon at UofM for the 2nd year and Conner even got to go tree climbing.

Conner has continued to love school and all of his therapists and works harder than any kid in his class to do every task (according to his teachers). He is (mostly) a really good kid. He loves going to the movies, still loves trains and going to Greenfield Village. He has changed a lot this year in to a big kid. He has been dealing with dysfluency (stuttering) for over 1 year now so we are pretty sure that it is not just a developmental phase but a permanent problem that he will have to learn to deal with. I will save that for another post. He loves to eat almost everything and although he went through a phase when he wanted PB and J for every meal, he doesn't really ask for it any more. He LOVES sushi. I'd say that's really his favorite food if he could pick. Conner likes to play with my iPad in waiting rooms and still loves being read to. He also loves anything Disney and Kidz Bop music. He is very creative and likes to pretend play with just about everything. He is getting in to board games and got a few new ones this year that we have been playing with. He's a pretty fun little dude!

Brennan has grown up so much this year. She loves to play with her babies and anything that Conner has. She has absolutely no interest in TV or videos at all but somehow she knows Elmo and LOVES him. She also really loves books and we read them over and over all day. She loves music and loves to dance. I can't wait to get her in to a dance class (if she wants...when she gets older of course!). Even though she can be challenging, she is also so much fun. She has such a cute smile and giggle. She is so picky about what she eats and likes snacks more than meals. We just keep trying. She likes yogurt, yogurt raisins, frozen yogurt (see the trend?!) and veggie straws. She does like pizza sometimes and turkey and cheese roll ups like Conner. Tonight, she actually willingly ate raw broccoli. It was so strange...but maybe she's growing up!

For David and me, this year has been okay. We would like to get out more just the two of us but it's hard. We are hoping that 2013 is great for all of us. Looking forward to making some changes for all of us.

Highlights from 2012 in no particular order:

Happy New Year to all our family and friends...I'm sure noone is reading us any more, but maybe it will pick up in the new year!