The Good, The Bad, and the Ugly

I seem to barely be keeping my head above water. For me stress seems to come with MIGRAINES. So that is one thing I've been fighting. Migraines they make me lose entire days of time, which puts me further behind, which makes me more stressed. You see my problem here. . . So here's a little update of some good, and not so good things from the past week.

Good: Daniel's MEAP scores came in the mail. MEAP is the statewide achievement test here in Michigan that everyone takes (except for you IEP savvy people who take the MIAccess,) Daniel took the MEAP only in math this year, because we thought that would be the most appropriate test for him. Testing him is not always easy, and he gets accommodations for it, like more time, a different location etc (write those in the IEP folks!). But still he usually doesn't do well. I know that the testing doesn't always show his true levels of achievement, but the scores can be gut wrenching to see. They usually get glanced at and filed away, far away, so I don't have to see them. It's easier to go to my happy place of denial that way. But not this year! He went from a 4 (not proficient) last year to a 2 (proficient for 7th graders!) this year. This is in comparison to all 7th graders in Michigan!

Bad: In Daniel's Resource English class there has been three parapros available to assist a class with very high needs. One was just pulled from the class to be put into another class, and it was Daniel's long time parapro.

Good: I had a very good conversation with the special ed. director. This was after talking to teachers, vice principals and principals. She understands my concerns and has assured me that if Daniel starts showing frustration and falling behind (after making so much progress!) that they will reassess the situation. I have known her a long time and I feel confident this is true.

Bad: Daniel was screaming on the bus last Wednesday and hitting himself because the natives (teens) were restless and acting like caged animals. i.e. hanging out the windows, arms flailing around similar to chimps at the zoo reaching out through the bars. This, not too surprisingly, stressed Daniel out. The bus driver was trying to get the kids under control. They wouldn't listen (and refused to raise the windows?!) which made Daniel even more upset. The vice principal was called out and he had to RIDE THE BUS WITH THE KIDS. Daniel recovered part way home since the bus was SILENT (a "request" from the vice principal). I then received an email explaining the situation from the vice principal.

Good: This lead to a brain storming session about giving Daniel something to concentrate on while on the bus. If he is in noisy situations (like a sporting event his brother is participating in) it helps for him to have something else to concentrate on. Like his "DS" (Nintendo DS). When I asked him what would help him on the bus he answered "my DS" which was immediately shot down by me. I fear him losing it or kids would want to see what he is doing and hang over his shoulder. This would NOT make him happy. During my conversation with the special ed director. She immediately offered up an MP3 player for him to borrow. We loaded it with music from Fantasia and so far, he is ONE HAPPY BOY! It has worked like a charm! It is very relaxing for him and the music makes him happy. Now he can ignore the caged animals if he so desires...

Bad: A friend let me know that her daughter reported that she witnessed some kids harassing Daniel in the hall and frustrating him to the point of him getting upset.

Good: She stepped in and stood up for Daniel

Bad: They didn't listen

Good: This led to topic number 3 with the Special Ed director and she was very upset about it. It seems that is it is being taken very very seriously by the school and we are working on it. When I had dinner alone with Daniel last Thursday we had a conversation about his morning routine. (an entire conversation!) When I got to the spot where I thought the harassing was occurring I asked him if people ever bother him. His answer. "Sometimes". Which makes me think that it happens with some regularity.

Bad: While talking to the special ed director about this I was crying the ENTIRE time. In my defense, I was also in the middle of a migraine day and was not handling anything very well. It was an ugly cry too. Not a few tears, but all out crying.

Good: She was extremely kind, especially when I asked if she could please just ignore my crying and continue on with the conversation. She was very sympathetic. We have known each other for many years (long before she became our special ed. director.) I have always felt a connection to her and I think that is reciprocated. She immediately called the social worker at the middle school to get to the bottom of this issue and delivered the MP3 player to come home the same day!

I talked through this with my friend afterward. (crying again). This is the friend who's daughter stood up for Daniel to several kids. This girl has the self image and strength as a 7th grader to do what is right, for someone she cares about. Not only is she amazing, but her parents are too, for raising such a child. I am starting to sound like a broken record but I am very lucky to have them in our lives. As I was crying to her on the phone, and complaining that I can't stop crying when talking to someone like the special ed. director about an emotional issue, or in a meeting in front of people and she said something that made me pause. I'm sure I will never ever forget it . She said, "You cry the tears that he can't cry for himself and you get the job done and make it a better world for him."

Wow. What a powerful statement. I said, "that's beautiful and I'm stealing it from you". Which I am! That is honestly the most lovely thing I've ever heard anyone say. I wrote it down immediately so I'd get it right. I'm glad I did because I only remembered the "you cry the tears that he can't cry for himself part". I had completely forgotten the last half about making it a better place for him. I guess I had forgotten that part, because in terms of that, what choice do we have as parents? In my opinion, that is why we are here, and I know that I will always do that. Sometimes when we are having a hard time with Daniel, I think back to about 5 days after he was born. He was a very sick little boy and was in an incubator for several days receiving oxygen and medicine. It had been a long week, but we knew at that point he was in the clear and recovering. I was sitting in my special room at the hospital for mom's whose children are sick and still admitted after the mom's are released. They give a bed to you and you can stay in the hospital to be close to your baby. I was holding him in that room and looking into his face and I clearly remember promising him that I would be there for him always, I would be there to protect him and help him with everything, that I would do whatever necessary to help him. It was a different feeling than with my other son. It is almost like I knew that the hard part wasn't over and it was going to be a long long road with Daniel. But I have kept my promise to him from that day. I always always will, through the good, the bad and the ugly.

Spring in Michigan

We can feel it. The promise of green leaves, flowers and sunshine. After a long cold winter and a very snowy February, spring is in the air. We went from very cold temperatures to the 50's everyday. Which, if you live in Michigan, sends people into a spring frenzy. Some people stopped wearing coats when it was 48 degrees! I say SOME because I do not fall into that category. I am the person who is shivering when it is 75 degrees. Nevertheless, the sun is welcomed with open arms.

Last week the warmer temperatures fell in a week that gave us two half days and one full day off of school. On Tuesday, the first half day of the week, I was trying to paint my laundry room in preparation for a delivery of a new washer and dryer (yeah me!) Only to be met with requests to get the bikes down (they are hanging upside down from the ceiling of the garage by the way, not an easy task). This then leads to "my tires need air" and "can you come on a bike ride". My painting stopped needless to say....

Daniel went on at least 5 bike rides last week. He whips around our neighborhood a MILLION miles per hour. Zachary can't keep up! And at one point when Daniel went FLYING over a rogue patch of ice Zachary reports that he was fearful of Daniel wiping out. Of course Daniel went over it without missing a beat and Zach slid and crashed only to have Daniel continue on at full tilt, with Zachary left yelling "WAIT, WAIT, WAIT!". The next time they went out I loaned Zach my Blackberry in case of any accidents. (yes, I know where that is leading....) Daniel was blissfully in heaven. I found myself thanking God for that Bike camp nearly two years ago. It totally changed our lives. Not only does Daniel get more exercise, but I think he feels ALIVE flying around the neighborhood at warp speed.

The feeling of spring continued last night after Daniel's group therapy of speech/social skills when he was feeling particularly anxious. He had worked really hard and kept all of his scripting in his head for an hour. He was upset at how difficult a game was (and the pace of others playing it). He kept it in. Then when we got into the car, he needed to get it OUT. We arrived at home and he had his usual chocolate chip cream on a regular cone (NOT SUGAR that would be unacceptable on so many levels to him) he requested to go on the trampoline for the first time of the year. In the spring it gets flooded in that part of our yard, but for the first time the ground wasn't under water. We gave him the green light.

Todd and I were watching him jump with joy (literally) on the trampoline. Flying through the air. It still calms him right down. (If you have a child with austims and you don't have a giant trampoline, I recommend you go out right now and BUY one). That anxiety was filtered through his legs and into the air instead of at a slamming bedroom door. It was exhilarating, even from the kitchen window. Then he did his next favorite thing after the jumping, he lays down and watches the clouds float overhead. What a relaxing and enjoyable feeling. To exert the frustration then lay down and watch the light clouds overhead. It relaxes me just thinking about it. That is the payoff in Michigan after a long winter. It makes us think of what is to come in the next months. The beautiful Michigan beaches, the Great Lakes, and for Daniel, laying on the trampoline at dusk and waiting for the bats to fly overhead as the sun drops below the horizon. I can hardly wait.

Conferences

English Language Arts. Is it an art? Where does that come from? According to the American National Council of Teachers of English, the five strands of the Language arts are reading, writing, speaking, listening, and viewing (visual literacy). Put into perspective with a person with autism and the definition might was well read "NIGHTMARE".


I have heard the reports for years that Daniel's reading comprehension is at a 2nd grade level. His word recognition is always at least at grade level, sometimes higher. He has always been able to read the words, it's the understanding of the words that hasn't been so great. We have been focusing on Daniel's math for quite a while, he does better with one "push" at a time. The math has really clicked. He is working in a class that has a slower pace, but same content which is perfect for him. He is thriving. It is amazing. He is working independent much of the time and it is beautiful. He has A's. In PRE ALGEBRA. It is mind boggling. Now what? I say great, what about English? Will I ever be happy? There is always something to tackle. This 2nd grade comprehension really kills me. I mean how are you supposed to keep up with science when you can't understand the content of the language being thrown at you?


I have felt that he comprehends more than we know. Standard tests are, of course, not always the way to go with our kids. Daniel is in a resource English class this year. This is a new direction for him and for us. We really wanted to get him working on his comprehension to see what would happen. A lot of his academic goals are around ELA. I have been asking questions of the teachers and have been told, "he is fully participating, he is answering questions, he is "getting it"". How can that be when they are reading 7th and 8th grade books? I know he can read the words, but actually answering questions? That seems, well, unlikely. Don't get me wrong, I have confidence in his abilities, but it's going to take a while, right?

Last night I met with his case worker (who Daniel hugged upon their first meeting he loved her so much) and his English teacher along with yet another Michigan State Univ. intern. I love when the interns are at our meetings but wish I could crawl in their heads to see what they think of this crazy mom before them!? It seems that Daniel's most recent comprehension test put him at a 50% level for SEVENTH GRADE comprehension. Which I believe cute case worker said is average proficiency. 7th grade? That's the grade he's actually in! Is that possible? He has been tested other times this year and the last time it was at 6th grade. Now it's at 7th grade? She started at a 2nd grade level, he was at 90%, 3rd grade 80% + etc. It all made perfect sense, with each grade level up he went down slightly. BUT he is at a SEVENTH grade level. I have to keep repeating it to wrap my brain around it. They are using a different method of testing than they have in the past. It is more suited to him, and they think more accurate. We think that Daniel's verbal language difficulties have prevented him from showing us what he knows. This is not earth shattering, we knew that on some level. But I didn't expect that. Not at all. How incredible.


I was so happy. I am so happy. But as I think back and realize I didn't show it at all. They must think I'm an ice queen! But part of me wasn't um, well, comprehending the whole thing. His ELA teacher said, "I know you are concerned but he's doing incredibly well". She must be thinking I'm crazy since she has seen all of this growth. They ask him a question, he answers, (correctly and appropriately) I think she must be wondering what I'm concerned about. So I then explained that Daniel has been (on paper anyway) at the same reading level for freakin' ever. When he started ppi (pre primary impaired) (preschool for those with special needs) after the first day the teacher said, "can he read?" and I was all,"yeah". Completely oblivious to the fact that not every 4 year old can pick up a book and just read it. He'd been doing that for over a year at that point. I didn't know at the time that this was called Hyperlexia. The linked site defines it as a "precocious ability to read words far beyond what would be expected at an early age and/or a fascination with letters and numbers. These children have barriers with language acquisition and communication."....later it goes on to say, "Hyperlexic children follow a similar pattern of development. First words developed about 12 - 18 months, but approximately half of the children lose gained words and do not begin to regain them until after age two." It goes on to talk about how language is primarily echoalic and "chunks" and even whole conversations may be used in conversations. This is exactly what Daniel does. In fact the above all sounds exactly like they are speaking of him.


Speaking with my friend (thanks Amy!) I realize that my lack of enthusiasm regarding Daniel's excellent news, and my constant "what should we focus on next" is pretty much a self defense. I am protecting myself from celebrating because I know very easily today I could get a call that Daniel has banged his head so hard on a wall that he cut himself, or that he because so frustrated because someone did something like walk out of a room. I take my successes as I do with the frustrations, with a grain of salt and hopefully with a little tequila ;)

I am thrilled with his progress and I don't take it for granted for one second because I know there are many families who will not get this fabulous news. Because Daniel is who he is, we can continue to push him forward. He can slowly emerge from his shell. We are seeing a crack in that shell. I didn't know if I ever would. I am so proud of him. He is an amazing child.

The Conversation

Scene: A cold Monday evening in Michigan. Daniel's weekly group session. His therapist was working on conversations between the boys. Daniel is quite a bit older than the other boys but his speech is much more impaired than theirs. Despite their young age (and Daniel's giant body in very small chairs) their speech helps pull him "up", in my humble opinion. The therapist sets up a conversation between Daniel and a boy I'll call Sam. The subject; Mackinac Island, Michigan. There is more about this magical place here. The therapist has helped them with canned beginnings and transitions, well for years in Daniel's case. I was listening to this over a speaker while in the waiting room, I could not see them. I also do not claim to have 100% recall (as IF!) so let's just say the "spirit" of it is correct.

Daniel- Have you ever been to Mackinac Island Sam?

Sam- Yes, I have, have you ever been there Daniel?

D- Yes

(thought bubbles over their heads)
pause
pause
pause
thinking
processing
what's next??
do I continue?
when will it be 6:30?

D- There is a Grand Hotel there. Have you ever stayed in the Grand Hotel?

(are we seeing the scripted parts? and transitions?)

S- No, I've never stayed there, have you?

D- Nah.

S- I've ridden bikes all around the island. Have you?

D- No, I rode on a carriage ride. (thought bubble- it's a LOT less work that way)

pause
pause
pause

D- Do you like the ferry?

S- What fairy, what do you mean? (this is an example of a huge problem with speech and conversations for those on the spectrum. Homophones are very confusing. I believe Sam was thinking of fairy of the Tinkerbell kind)

D- A ferry like the Arnold Transit Company. (this is seriously what he said!)

S- oooooohhhhhh.

D- Where did you sit? Do you like to sit on top?

S- Oh, I sat on top and I thought it was sort of creepy!

D- I sat on top. And I sat on the bottom, inside, when it was raining.

Then a lengthy conversation started about the seating on the ferry. By the windows, in chairs, outside, inside. I have honestly never heard such a long exchange. I never heard the therapist interrupt or interject anything. She might of been gesturing to continue, but she didn't say anything. By this time I was laughing out loud. Part of it was it the joy of hearing my oldest son, at age 13, engage in the longest conversation I've ever heard. Part of it was the autistic idiosyncrasies that were in there and were, in my opinion, adorable.

All parents "really" don't know if their child will grow up to get married, be able to hold down a job and live independently. Let's face it there are a lot of deadbeat 40 year olds out there letting mom still cook and clean for them. No one thinks that will happen to their child. But parents who's children are not special needs, do know that they can converse with their child. They know that their child will be able to appropriately express their needs. Those parents know that they will be able to talk to them about their hopes and dreams, and often take it for granted. We don't all get to do that. And when your child is particularly challenged in these areas, it's almost as you don't DARE to hope for it. You work at it, you try, you encourage. But if you hope too much, will it be more difficult if it doesn't happen? I suppose I try not to think about it. I am a "put one foot in front of the other" sort of girl. But in that dark, dank, depressing waiting room that evening, I was laughing and crying by myself. Then the therapist walked out at the end of the session to talk to me and her jaw was LITERALLY hanging open. She was shocked. And thrilled. And amazed. That is the really amazing thing about raising all kids. You never know. You really never do.