Wednesday, February 6, 2013

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.