Private Speech Therapy

Today was Landon's first official private speech therapy with Ms. Lori. I'm not sure if he was excited but I sure was. I am amazed at what she could get him to do with a little persistence. As you know, I was not overly thrilled with the speech he was/is getting at school. I don't think it is any fault of the therapist, just the way "things are" in the school system. I am very excited about the potential Landon showed today considering I don't feel that he progressed as much as he could have with a little more "push" during the school year. I have VERY high hopes for the months ahead. She has even agreed to allow me to video her sessions with Landon so that Travis and I can look back over it to help us better work with Landon at home.

The first thing we discussed was goals. Ms. Lori has written out a few goals for Landon to get him started. First let me show you the goals that were written in Landon's IEP for last year.

Area of Need: Expressive language
Annual Goal: By August 2010. Landon will increase expressive language skills to be able to communicate effectively , orally or by using signs, in 80% of opportunities in the school setting.

Area of Need: Articulation
Annual Goal: By August 2010, Landon will improve the intelligibility of speech production to be understood in 70% of opportunities presented daily.

These goals sound great and I agreed to them BUT looking back I have a few problems. First, no one really used signs with him. If his speech was not moving along they should have been working on signs in order to meet his expressive language goal. Second, there is no mention of how Landon was going to get from "point A" to "point B". I understand that they can't write all of the short term goals in his IEP but that is why I requested getting update every couple of weeks to let me know what they were working on. How many updates did I get last school year from speech? One, and that was after I wrote a letter requesting an update. Nothing there after. 

Now, compare the IEP goals with the ones that Ms. Lori wrote after meeting Landon only one time for his evaluation.

1. Landon will select activity when presented with a picture choice in a field of up to 6 pictures 100% of opportunities with given a verbal command.
2. Landon will imitate a variety of CV sounds on 9/10 trials with minimal cueing.
3. Landon will produce simple CVC words 9/10 trials in two consecutive sessions without cueing.
4. Landon will use a sign or picture card with verbal approximations 4/5 trials to request an object during two consecutive sessions without cueing.
5. Landon will spontaneously use 5 two word combinations in one session.

Ms. Lori told me that she thought Landon would master #1, #2, & #4 soon but that gave us something to start with. #3 & #5 were the two big goals that she wanted to work on and that she would add more as she met with Landon and sees more of what his need is. I can't wait to show you what she does with him during a session. After only one meeting, she has inspired me to create a "communication board" , which I'll write about a little later, to help give Landon choices and chances to talk and put words together that we know he can say.

Due to Ms. Lori going on vacation and Landon and I taking a trip to K'ville before school starts we will not have another session until the 18th. I can't wait!!

A lesson to learn

This is from Dave Hingsburger's blog.  I read this on a friend's blog and felt that it was a powerful lesson for me.  Something to really think about.

Down Syndrome, Off The Clock

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.

Good nights sleep...What's that?

A good nights sleep...What's that?  At this point, I'm not really sure.  It seems like it has been forever since we have had a full nights sleep.

First, let me go ahead a say that Landon sleeps in  our bedroom.  Not in our bed, well OK, not most nights, but in our room.  His crib is set up next to our bed so that I can hear him if he has a seizure.  It's hard to describe but when he seizes he make some sort of strange sound, not loud just strange, that wakes me up.  Most people that hear this say, "why don't you just use a baby monitor in his room.?"  Well, my mind tells me the same thing but it just doesn't feel right.  I want him right there so that I can get to him.  I'm afraid that I will miss one and therefore I won't catch it as early, won't get the med. issue adjusted as early, and therefore will be the cause of any issues such as increased delay.  Most people will not understand and that's OK.  Travis and I both agree that this is where Landon needs to be so it works for us.

Now back to the full nights sleep.  He is still sleeping in the crib due to our concern for safety issues but that is about to change.  We bought a fire truck bed many months ago thinking he would just move into that when he was ready but now we have changed our minds.  Landon has been waking up EVERY night for the past several months and he have attributed that to an uncomfortable mattress.  When I went to Knoxville for a couple of weeks he slept in a "Big boy bed" and didn't wake up once.  When he does get into our bed in the middle of the night, he sleeps fine.  Now some will say that's just because he wants into our bed and normally I would say that's true but he doesn't really "wake up".  It more like he cries, or moans...really like he is just not sleeping well and uncomfortable.

Our solution?  New Big Boy Twin bed.  It is still going to be in our room so that we can keep an eye on him.  Travis is going tomorrow to order it and we are praying that this works.  I really don't know what else to do if it doesn't.