Band Concert

I am having a hard time starting this blog today. It is only because I have so much going around in my head I don't know where to start.  So I'm starting by saying I don't know where to start..hoping the keys will take me in the right direction.  I guess I'll start with the word START.  Here in Michigan START stands for the STatewise Autism Resources and Training.  It is a huge grant through Grand Valley State University.  I have been to many many START trainings.  It isn't usually parents, but all of those people on your team out there working with your child. I  like to know what they are learning and what they are supposed to be doing, so I go too.  It is also very helpful for me to improve how I parent.  It isn't meant for that, but I have gotten a LOT out of it. 

Last fall I attended a LINKS training.  Here is a bit of an explanation of what it is.  And what it is, is actually a Godsend.  Truly.  It is simple in concept, but not in procedure.  It is also the most win-win in education that I have ever seen.  A truly win-win situation doesn't come up very often.  The kids on the spectrum obviously get a ton out of it, but the amazing thing is so do the General Ed kids who are "linked" up with them.  It is so simple in concept it is genius.  Hearing Maureen Ziegler talk about it in training is mesmerizing.  Truly. Her stories of how LINKS came to be are so interesting I could listen to them ALL day long.  I hope you follow the link (ha ha) and read up a bit.  '

In January Daniel's high school got this program in it's initial stages.  Daniel has 5 LINKS with him every day.  It didn't work out schedule wise for him to have one first hour, but he does 2nd through 6th.  He has a different general ed student with him each hour. They sign up for a LINKS class, do on line work but in place of going to a class they go to DANIEL's class with him.  This does NOT take the place of a para pro.  Repeat, does NOT.  They are there for socializing and modeling.  See, kids listen to kids.  Not adults.  Adults can't act like kids.  They can't teach kids how to be kids.  They especially (we have found) can't model to a kid with ASD how to act like a teenager.  This has been modeled all over our great state with astounding results.  The Gen ed kids get as much or more out of it than the ASD kids.  And the better part? When you start getting kids to be LINKS who are struggling themselves? THEY turn around.  They know they have to come to school because this ASD kid is relying on THEM.  They have a purpose.  Their grades improve.  It isn't just for NHS (National Honors Society) kids.  It's a miracle.

So throughout this semester these LINKS have been with Daniel.  I have heard reports of Daniel branching out and being much more social at school.  He comes home excited about "making friends".  When we went to the musical 3 of his LINKS were cast members.  We went again.  We bought the DVD.  They saw him in the audience and RAN through the crowd to find him and thank him, truly from the bottom of their heart, for coming.  They met with Todd and I at school and asked us questions.  We answered honestly.  We also told them his ability to ask questions has dramatically increased since they have been with him.  It decreases outbursts and behaviors.  If he gets angry he recovers quicker.  It's amazing.  Have I said that?  So this leads me up to last night....

Daniel had a band concert.  He is always excited about dressing up.  He wears a tux.  He thinks he looks pretty darn good....and he does. Daniel is doing well.  I brought him back stage before the concert.  I talked to a student teacher and asked if Daniel would be OK back there on his own and he said, sure no problem.  I dropped him off and went and sat in the auditorium and waited like all of the other parents.  I didn't wait backstage with him.  He's fine, they said, and he was.  Todd, Zachary and I were in the audience waiting for the concert to begin and Todd leaned over and said "are you nervous or worried at all?"  I honestly answered, "no, I'm not".  He said, "me either".  "So this is what it feels like?" I thought.  I have never experienced this feeling of true calm before a concert that Daniel was involved in.  There is always a level of anxiety.  How incredible!!!  It's not just him making progress!! 

Then, when one of his LINKS walked up to our seats and greeted us with her wonderful smile.  She excused how she looked as she just rushed over from dance practice.  She said one of the LINKS blogged about the concert (they all communicate through a private blog so they can discuss things that come up with their student and problem solve together and share information. They can all be on the same page all the time).  We chatted then she sat down.  Daniel's group was getting on stage.  It was perfect timing.  I sat back in my chair thinking she has no idea what she just did for me.  She took time out of her nutty senior schedule to come to this concert. Sure she probably had lots of friends performing, but I was thinking about how happy Daniel would be to see her after.  I settled in for the absolutely amazing concert.  These kids are something else!  We are so lucky to have such a strongly supported music program in these tough economic times. 

After the concert Daniel was sitting with his group in the audience.  He was on the aisle.  As he was standing up, juggling his huge baritone and his music three, yes three of his LINKS (the same three who happened to be in the musical) ran down the aisle toward him.  Their enthusiasm was bubbling over and they were complementing him, congratulating him and telling him how dapper he is in his tux.  Generally making a big fuss about his awesomeness.  They took pictures as a group with him.  I stood off to the side holding his baritone with emotions I can't even explain to you.  When we all finally dispersed Zach looked at me and just said "wow, that was amazing, what great kids".  I could only nod my head as I was choking back tears. 

On the ride home Daniel was chatting about how great he was (totally true) and I couldn't speak.  I was so choked up.  I knew if I talked I would cry and he would think I was sad and I wouldn't be able to explain that mom's cry when they are happy too.  So I just drove home acting like this is like every other day.  When it wasn't.  It was something I'll never forget.  When you spend your life pretty isolated, even though kids like Daniel, they are nice to him and include him, things like this don't happen.  Until now. 

Hakuna Matata

Saturday was a big day for Daniel.  He had been eagerly awaiting it's arrival. You see earlier in the week I mentioned that his friend Emma asked if he wanted to go see The Lion King 3D with her.  He dropped what was in his hands and said "RIGHT NOW?"  Ready to bolt out the door and go.  That says a LOT since he still needs to have some warning for everything.  The lead time for those needed warnings has shrunk.  But it is still needed.  So to see his drop his snack and eyes go wide and practically start off to the car, well, I knew this was a BIG DEAL.

The rest of the week went along with a daily countdown to Saturday from Daniel.  Emma and her entire family, lead by mom Elizabeth, who has her own experiences with a special family member, have been a blessing to Daniel and all of us. I have written about them before here.  So the planning of this wasn't too much of a surprise, but it couldn't be more appreciated. 

Saturday morning arrived with Daniel bouncing out of bed.  His first words were "I'm going to The Lion King with Emma today!!!"  Elizabeth and I tagged along. Partially to be there in case Daniel had difficulty, and partially because we both wanted to see it on the big screen in 3D!  Daniel mostly enjoys the movies but he usually gets impatient 60 minutes in and you have to talk him through the rest.  I didn't feel comfortable leaving Emma with that.  He loves popcorn and that's a huge draw, but it can also make him feel sick and he has no control to stop eating it.  He'll dig into whatever is available, then be sick for 2 days and onerier than a wet cat.  So, I thought I had to go, to help through this. 

Daniel also has trouble with any angst in movies.  He has been known to yell out "Pooh look out!" and "Woody!!!!" With fear that his animated friends will come to their demise.  The separation of reality and movie is a very fine line.  He seems to be understanding this more, if we remind him (ahead of time).  So before we left I had a talk with him about all of the scenes in this movie that have a high anxiety level.  When he watches DVD's he only watches what he wants, and in the case of the Lion King, it's the music.  He doesn't bother with all that pesky dialog!!!  So I prepped him for the fight scenes and stampedes.

Movie time came.  I told him we'd be picked up at 2:10.  We were on the porch at 2:05 waiting on our bench.  He wasn't going to miss a moment!!!  I could feel his excitement as we waited  for our friends. We bought tickets, popcorn, drinks, got our seats where I told him "15 minutes to show time".  An important part so he knows what to expect.  I wish he'd have more of a conversation with Emma, but when he gets excited it becomes even more difficult for him.  The excitement brings out dialog from movies in echoalia that exhibit, well, excitement.  She is so sweet though, it doesn't seem to phase her.  Finally, it was time for "Our feature presentation"  which is what Daniel likes to announce to everyone.  It was a packed house!  The two week limited showing has gotten everyone out to the movies.  Daniel was singing along with the songs, (ok, so was I).   And he was better than I had EVER seen him in a movie.  He didn't get restless, he didn't ask a thousand times how long until it was over, not even once. I think he was so happy to be with them he didn't want it to end.   It was wonderful, and I was so proud of him.  We all left the theater happy.

We decided that Hakuna Matata should be what Daniel thinks about whenever he gets upset by something.  If you don't know, (but how could you NOT?) it means "no worries".  I told him whenever he makes a mistake or someone else does, instead of getting upset he should think of Simba singing that song, because you honestly can't be sad when you think, of it.  It's impossible.  As you will see in my next post, he took this to heart, and of course it is coming back to bite me!  Hakuna Matata!  Oh, and here is a picture of Emma and Daniel outside of the movie theater.  Then I'll leave you with a song....

An Exclamation Point!

We are in the first week of summer vacation. This is always a very tough week for Daniel and I BOTH. He is transitioning to a completely different schedule (or lack thereof) and well, so am I. We'll start with me. I just went from exercising for myself almost daily with friends, to... not. I went from working and going into an office when I chose to, to... not. I went from quiet most of the day to....not. I now have to adjust to the constant chatter of Daniel and to Zachary wondering "what's next". I get sensory overloaded. I never used to know what that meant, but life with an autistic child has given me great incite to myself. I need the quiet. Lots of parents are going through the same thing I realize but don't have the label for it. It takes me a few weeks to not want to scream at everyone to stop talking. I said "want", I don't actually do it. As the non autistic person in this story, I have the strength (most of the time) to "keep it in my head".

Daniel struggles. I remember the days when it would take a good 3 weeks until he'd transition to the summer schedule. Just when I'd think I couldn't take it, he'd settle in. That time frame has shortened, but the days he struggles, he really struggles. We spent Monday and Tuesday this week with Daniel yelling for a minimum of 2 hours. Slamming doors. Just being angry. When I very very nicely gave him suggestions of things we could do together or he could do on his own. He yelled "I CAN'T TELL YOU TO SHUT UP"....well, I thought, I think you just did....

The weather was sketchy. When school went away, so did the sun. It was bordering on chilly and the sky was threatening rain. The pool was out. I have one child that you have to fight with to get him to do anything and another who spends 4 hours at a basketball camp and then wants to know what's next? Opposites. It's hard for me to balance. I always figure it out. But for some reason it always takes me a while.

Yesterday, Daniel, told me "I won't be angry today" and it was actually much much better. I don't know which came first, if he made a conscious effort to not be angry or if it was his way of telling me he was feeling a bit better. Either way. It made me happy and more importantly,he seemed to feel a less stressed.

This morning I saw a missed text from my neighbor. Her boys are Daniel's age and twins. They walked home with Daniel this year and have been pretty inclusive with Daniel. They are used to him and Daniel's constant scripting. The Sesame Street talk doesn't seem to faze them. In fact they have reported an amazement of Daniel's vast knowledge of every single character. Their mom called to tell me that the boys were having some kids over tonight to sit around the new fire pit, roast marshmallows, make s'mores and "hang out" with about 9 kids. They wanted to invite Daniel. There would be loud music, but they didn't think that would be a big deal, as they've seen him at the "activity nights" at school and at another neighbors garage dance party. He's good with it. The concern seemed to be it might be a long time for Daniel. The mom wanted to make sure Daniel was good around fire. He is. He LOVES a fire. It is very calming for him. In fact we converted our wood burning fireplace to gas this year so we could turn it on at will. He loves it.

The only other concern of the boys is that neither their mom nor myself be anywhere around them. They know I'm always lurking around in these situations. I have agreed to stay away. The only other concern is it will be a long evening, but they live across the street, I am pretty sure when he's "done" whether it's an hour or two, he will be thrilled to be included and the time will be well spent. I gave the thumbs up to mom, and she said she'd have one of the boys text Daniel an invite, since that's how everyone was invited. . . Yes you heard me. During my absence from blogging Daniel got a cell phone. The time had come. With him getting more independence I felt better that he could contact me if he needed to. I also wonder if he can connect to some of his peers this way. Let's face it a one sentence text with time to process the information has to be easier for Daniel than a face to face conversation. It's worth a try.

I went back to making my breakfast and sort of forgot about what was going on. I didn't expect a teenage boy to even be up at that hour, let alone to text Daniel quickly. As I was eating my eggs, Daniel came bursting through the door from the basement. He said very excitedly, and slightly out of breath, "I have to get dressed!!" I was somewhat confused, but noticed him clutching his cell phone in his hand. I asked him why he needed to get dressed and he just held out his phone to me. I asked if he had received a text and he said "yes". I took the phone and read it. It said, "Hey Daniel, this is _________ and I was wondering if you would like to come over at 7:30 for some s'mores and brownies" (they SO have Daniel figured out!)

I explained that it was at 7:30 tonight, and he was in fact, not late. He relaxed a bit and said to me "I want to go". I told him he should text him back and let him know. Daniel took his phone and typed out "I would like to come over tonight thank you" Then he looked up at me and very sweetly asked, "how do I put exclamation points on this?" I think that I melted. Right then and there. He wanted to express his excitement. I could tell he was excited, but I don't think many other people would have figured that out from how he looked. But in that one sentence, he wanted to show his enthusiasm. With an exclamation point. How. Cool. I showed him how to do it, and he sent it off. He was out on the trampoline later, while I was weeding. He said "I'm so happy I feel like dancing". His funk is gone. His anger has dissipated. With the invitation from two boys who thought to include him. They flipped his switch as we like to say. I'm sure they have no idea how much it meant to him. But for us, it was !

Sticks and Stones

Sticks and Stones can break my bones but names will never hurt me. That was a chant that we used to say over and over as a children. I can still hear it ringing through my head in that sing song voice. I wish it were true. Broken bones can heal, but sometimes the sting of some one's words have a much more lasting impact.

This is something my friend have been "talking" about over email for a week now. Last week her daughter came home from school very upset after listening to an exchange between two of her classmates. It went something like this, "you are a retard" "no you are" "no you're a retard". You get the picture. Emma had been prepared for this day. Her parents had prepped her on what to do. She was to stay out of it and come home and tell her parents, which she did. You see Emma has a brother with Down Syndrome. I have written about my friends here before. She has a blog, find that here. Amy, the mom and my friend, emailed me about what she should do. She was very angry and hurt and her words broke my heart as I was reading it. I could feel her rage, and her disappointment. It's never easy to see your child wounded with words. I suggested she email the social worker at our elementary school. I have always found her to do a tremendous job teaching the children about things like this. I am convinced she is the main reason most of the children in Daniel's class are wonderful advocates for him. She followed my advice and emailed the school and suggested that they look into this link.



Monday Emma came home and said that all the 4th grade (it appears that it may be more of the classes too) had a time with the social worker and principal. It had been a difficult subject for Emma to hear. She cried during the discussion. My heart ached for her. Much to my surprise (and genuine delight!) my son Zachary stood up and added his two cents (being the noble advocate that he is). He talked of his brother Daniel and some of the challenges he faces. He has done this before and it seems that the social worker and he are becoming quite the tag team! Emma felt very grateful for Zachary standing up and giving his speech. She felt very supported. I felt very proud. He hadn't even told me about it. One of the other boys said that Emma was "very brave".

When I asked Zachary about it yesterday he told me some of it, but wasn't really interested in sharing. He did say that kids talked about their Grandma's or parents who use the "R" word and therefore, they had no idea it could be hurtful to some people. One girl said she used it in the past but never would again. Zachary couldn't understand why adults might be using such language. We talked about that for a bit. I told him that maybe no one every explained that it is wrong, maybe they choose to use it anyway. But for sure they don't know if they are never told. It sounds like it was a very good discussion and it sounds like many kids responded to it. I'm very proud of Zachary that he continues to advocate for the kids that can't always do so for themselves. I'm proud that he supported his friend, when mostly no one else did. I'm proud that he is so self assured that at barely 10 he has the bravery to do that. I am mostly thankful that Amy and I can keep up the fight to be accepting of everyone, and we can do it togther and that our kids will be behind us doing the same. I'm hopeful that we can change the "R" word to a more positive one, like Respect.



As I was finishing this blog this story came across from disabliity scoop. Read about white house chief of staff Rahm Emanual being quote in the Wall Street Journal asying "f_ing retarded". Read about that here. Apparently, we have a lot of work to do. I for one, am hopeful.

Buddy Walk

Sunday our family headed out into a beautiful fall day for the annual Buddy Walk at Potter Park Zoo. We were walking in honor of our friend Joe. Joseph has Down Syndrome and is a friend of our family. His mother Amy and I sit together every Thursday afternoon during swimming for Daniel when it is "in session". "In session" happens to begin again on Thursday, October 1. That isn't how I originally met Amy, however. We originally met through Zachary. I believe I have told this story before on this blog, but on Zachary's first day of kindergarten I was a mother in tears. Not because my baby was starting kindergarten, it was because we had had a change with Daniel's para pro at the last minute and it had rocked my world. The day was starting not as planned and I was worried how Daniel would handle it. I was very upset and still trying to do the play time in the Kindergarten room with Zachary. As usual for him, a big moment in time was over ridden by Daniel.

I remember sitting at a table, I believe it was covered in playdoh and fighting back my tears. Amy asked me some questions. I don't remember what, but I remember her kindness. I soon found out she was also a mother of a child with special needs. This child turned out to be Joseph. We have had a bond since then, because even though we don't have the exact same challenges, we understand each other. At least I'd like to think so. Zachary and Emma are very similar kids, both "the siblings" of the "special" child. Joseph is much younger than Daniel so I have lived some of the things coming their way. They also have challenges that I have not dealt with. There is one thing for certain. We both have some damn cute kids!

We went to the Buddy walk in support of Down syndrome and our friends. It was a wonderful day and "Team Joe" had a BIG showing. They had food, drinks, blow up slides, jump houses, Sparty (the Michigan State University mascot who is the BEST mascot anywhere!) and the best of all, friends. Here are some pictures of our day. It was wonderful!! If you have a buddy walk near you, be sure to support it!!

Connections

We have returned from our first "up north" adventure this summer. If you aren't from Michigan you probably don't know about "up north". People who live in the lower part of Michigan spend a lot of the summer time headed north. I heard someone who had lived here for a year saying, what is with this "up north" thing? I don't get it. A friend said they'd show her and brought her to beautiful part of northern Michigan. All she could say is "now I get it". You just have to experience it. And no matter where you go, it's generalized as "up north". Every time, on our drive we get to a certain point, I don't know where it is, but there is a spot on the highway that the hills begin and the evergreens extend high into the air and I exhale and think, we are now "up north". Even though our destination is another hour and a half away it is a feeling that always happens. It's wonderful.

We spend our "up north" time in Charlevoix. It's nickname is actually "Charlevoix the beautiful" and that about sums it up. It is a tiny town, that has Round Lake as the center of it's downtown. There are enough yachts and sailboats there to make you think that someone in Michigan must still have a job....Round Lake connects Lake Michigan and Lake Charlevoix. No matter where you are you are surrounded by gorgeous blue and turquoise water. It's where my in-laws grew up and where we now make our summer pilgrimages to. This long holiday weekend we brought our friends with us. The whole family. They are moving away from us, well not from us, specifically, but their family is leaving Michigan for Florida within the next few weeks. It will be life changing for our family as well, because "the mom" Alyse is my closest friend. Her oldest child is Zachary's best friend. Mike, the dad is Todd's good friend. They have two gorgeous girls who I would love to take home with me permanently. This sucks for us. Big time. We decided to steal them away for a weekend and keep them to ourselves for a fun time in Charlevoix. So we did. I knew it would be fun. I knew it would make memories for our families. What I didn't anticipate would be what Daniel would get out of it. Honestly I hardly considered him when making the plans. It's one of those happy accidents that took me by surprise.

The youngest of this family, Elin, is nearly three. This month actually. Recently when we've been together we have noticed a connection growing between her and Daniel. It is a really interesting relationship. She is a petite little thing and Daniel is, well, gigantic and will be a teenager in 3 months. But Daniel of course, still loves things like Blues Clues and Arthur. He likes to play games that she likes to play. Developmentally, they like a lot of the same things. I believe it goes deeper than that though. There are some people who you just connect with, and I think this pair does. Despite the huge differences between them. Daniel, who has zero patience, has so much patience for her. Elin, despite her petite appearance, is one of the strongest personalities I have ever met, and since she isn't MY child, I think it's adorable! What this weekend did for Daniel is what all kids need to break out of the autism "shell". It's what we try to do for him daily and can't do. The visitors broke up his Charlevoix routine. All of a sudden there were all of these people there who also wanted turns with the dvd's and walks in town. People you had to wait for and share your bubbles with. It pushed him out of his box. A lot of the time that comes with much distress for Daniel and he gets very agitated. But this weekend he took it in stride.

When he was watching a dvd Elin came marching in and watched him rewind to the same spot over and over and over. She looked at him and giggled and said, "Daniel, what are you doing??" Not with a mean spirit, but she'd never seen someone do that before and she's only two! Todd suggested to Daniel that Elin may want to watch with him, but she likes to just sit and watch the video all the way through. So he put it to the beginning and sat and watched it with her! What?? That does NOT happen. Then she suggested that she would like to watch Arthur next. Ok she really marched to the videos, picked it up and said I want this. I told her she could watch it when this one was finished. So HE PUT IT IN AND WATCHED THE WHOLE THING WITH HER. Without yelling. Without anger.

Every night he records his voice on a Vtech computer before bed. I had him do it early on the fireworks night, anticipating a late night return and him falling apart because of the time of our arrival home (which was midnight). So he actually did some of his routine before we left for the fireworks to get it out of the way (that actually worked be the way, shocking, I know). Elin wandered in while he was recording his voice. I stayed with them because I saw nothing but a bad ending coming. He has an order that he goes through and does not like it interrupted. She plopped down by him. I explained what he was up too. Of course she said, "I want to try". So she started belting out "Tomorrow, tomorrow, I'll love ya tomorrow, it's only a day away...." in pure Annie fashion. Where was a video camera? He listened to it back. She was starting to take over and he said to her, "I'll say . . . . . this, then you say that....." AND SHE DID. He incorporated her into his routine and he changed it. They took turns, she listened to him. Then the test. His last recording is always SILENCE. No one can talk. So he says to a two year old, "You have to be silent, no talking", and she did? It was just, for lack of a better word, weird.

One of the mornings, all of the kids, except Daniel were drawing. Daniel was up in his room, probably doing his getting dressed routine which takes up to 20 minutes. Elin was drawing a typical almost three year old drawing. I was talking to her about it, trying to find out what she was working so intently on (I couldn't see anything but scribbles in my head) She showed it to Todd in the kitchen and she seemed disappointed in her drawing. She showed him and said, "it's broken" in a sad way. We sort of all thought, huh? How can a drawing be broken? A few minutes later Daniel came down and Elin handed him her drawing. He glanced at it and said, "this is broken" and handed it back....? What the? Alyse said wow, they have quite a connection. My mother in law, said it must be a developmental thing. I think it's both. They are the only two who could see what was so obviously to them, "broken". Any thoughts?

As I've mentioned in routines, Daniel's routine for snack is a chocolate Poptart and 10 saltine crackers. The 10 crackers is a VERY important part of this. We often ask him for one, knowing that he will say no and protect it with his life. But we try to give the possibility that he may one day give up a cracker. Why? I don't know, to give him some flexibility. Of course Elin has no concept of this and when she saw Daniel's snack she said, "can I have a cracker?" You guessed it, he gave her one. Honestly, of everything that happened this amazed Todd and I the most. This is very rigid for him and I have never ever seen this happen. He just handed it to her like he does it all the time. No angst. Nothing. She asked for another, Todd suggested she may not want to push it....

Zachary had been coveting a Nerf gun. Not any Nerf gun, but the "N strike longshot CS6". (sounds sort of A Christmas Story doesn't it?) Todd and I went to K Mart (there is no Walmart in Charlevoix where I refuse to shop anyway. Charlevoix ran them out of town when they wanted to build there, yet another thing I love about Charlevoix). After some discussion of the fact that Zachary literally never asks for ANYTHING we decided to splurge and buy it. Todd very observantly said that we then needed to find something for Daniel. A nearly impossible task. We found a purple bubble machine and purchased it. He loves purple and loves bubbles. We got a giant refill of bubbles and bought it. I knew he'd be possessive of the bubbles, which he was, but he pretty easily shared them with the girls and let them use them when they wanted to. They spent a lot of time watching the bubbles floating way into the sky over the houses and out toward the lake together.


While this weekend was partially very selfish for me. I wanted to make even more memories for our two families. I wanted our friends to be able to spend time away from the stresses of trying to move their whole family across the country and all the work that comes with that. I wanted Zachary to get as much time as possible with his buddy. What I didn't expect was Daniel to be pushed out of his box by his good friend Elin or for him to find a connection that I know he will never forget with an unlikely friend for him, a blond haired, blue eyed two year old, who seems to know just what he needs. I am sure that the connections our families have found will extend all the way to Florida. Ties like that stay together no matter the length of time between visits. And while we'll miss them being part of our every day lives, I look forward to our visits together and seeing what else will grow out of them.

Make video montages at www.OneTrueMedia.com

Accepting Friendships

I just finished reading a book for my new book club. Tomorrow will be the 2nd time we will have met. I am hosting and while I should be preparing, I'm blogging. Typical.

The book is "The Memory Keepers Daughter". I have read it before, but it has been a long time so I tackled it again. I had even forgotten what it was about until I started reading. Long story short a woman has twins (unexpectedly, this takes place in the early 60's) they didn't make it to the hospital. Doctor/husband delivers babies in his clinic. Mother is drugged and out. First baby born, healthy boy. Nurse takes him. A second baby starts coming, Dr/dad delivers and he sees the child has Down Syndrome. In a split second decision he tells the nurse to take the baby to an institution, WITHOUT TELLING the mother (I know, right?!) . Nurse won't do it and raises the baby herself. The Dr/dad had a sister who had Down's and died at a young age. He was trying to "save his wife the heartbreak". GIGANTIC secret ruins the rest of his life and marriage. He realized this was a mistake not too far in, but he thought it was too late to turn back and ruined everything anyway. Terrible terrible terrible and heartbreaking.

The reason I bring this up, besides the fact that (thank GOD) we have come a long way in 40 years. As I was reading last page today I was a bit overcome when the brother is meeting his sister and finally getting to know her. He was observing people talking to her and he became uncomfortable because the people she was talking to were uncomfortable with HER. "he realized, he would be torn like this, aware of Phoebe's awkwardness, the difficulties she encountered simply by being different in the world, and yet propelled beyond all this by her direct and guileless love."

I found this very compelling. I will admit there are times when I see Daniel talking to someone and I think "oh no". Especially if I think they will be uncomfortable with him. I don't know why that is the first thing that pops into my head, but sometimes it is. It upsets me, because why should that be? We want him interacting, right? I am not afraid of what he will say, but how people will react to him. I will watch him from a far sometimes in these situations and looking for the other persons reaction. It is being stuck in that moment, watching without hearing. A bit unsure. Waiting. "yet propelled beyond all this by her direct and guileless love. " That quote completely summed it up for me. I'm in love with that.

Because of this, I tend to judge people on their reactions to Daniel and by his reactions to them. He knows who he likes, that is for sure. He doesn't have that filter to pretend that he likes someone. Last week we were invited to a local fitness club on a half day of school for an afternoon of shooting baskets and swimming with some friends. We accepted. We have become friends with this family through my 9 year old Zachary who plays soccer, basketball and baseball with their 9 year old. We have spent many many hours together on the sidelines. But haven't really connected until recently. I thought it would be fun for Zachary to play with his friend, fun for me to talk to the parents, and fun for Daniel because of swimming. PLUS it's a new place, and I like to introduce new places to him.

It was a great afternoon. Everything went well. Daniel was a bit scared of all of the tv's around the fitness center showing basketball games. (fear that that awful logo that may appear!) Our hosts are faithful followers of my blog and knew about this fear. They went out of their way to make him comfortable with out enabling him (hi mama!). It is such a blessing to find people that are completely accepting of our whole family. Everyone SHOULD be, but they aren't. I have many "old" friends who I don't really talk to much anymore, because I just never felt that they entirely accepted Daniel for who he is. They may say the right things, but you can feel the awkwardness. You know. Daniel knows. I can see it in his reactions to people. He lights up when people are accepting. If they aren't, he immediately disengages. I am so completely BLESSED to have MANY families here in our small city who I know we will continue to be friends with, for a long long time. Those connections are so important so we don't feel isolated. Having a child with special needs can be very isolating. I am not very easy to get to know (so I've been told) writing this blog let's people in much more safely than face to face. But there are people who we are very close to. When Daniel talks of the Sandborn's coming over he does so with great enthusiasm as well as many other families right here in our neighborhood. And based on his reaction telling his dad about our day with the Spicers', I think, if they'll have us, they can be added to that list.

Leap of Faith

It's been a long time since Daniel has had a friend over to our house. A long time, as in maybe, never? He has been to a couple of people's house's here and there. It usually ends up looking like Daniel doing his own thing and it was never very comfortable. For some reason, last week, I got the bright idea for Daniel to have a friend over from school. I have bragged of Daniel's wonderful peer support and that's true. It just rarely extends outside of school.

When Daniel was about five or six, we went to a Dr. at a major university who specializes in autism. It was mostly a wasted experience. I had seen the Dr lecture and he was very good at that. But from the office visit, we walked away saying "enough". I remember one thing very clearly that he said. We really needed to find a kid for Daniel to play with regularly. One not on the spectrum, who would be patient enough to deal with him, who would give hours a week to us. I remember thinking, "where would you find this magical child who would be so giving of themselves and expect nothing in return?" By nothing in return, I mean not get interaction back from him. I found myself shaking my head. My thought that we could never find such a child.

I was surfing around on facebook earlier in the week, and saw that a mother of a boy in Daniel's class was on fb too. So I made a leap of faith and I popped over to her page and just asked if her son would be around this weekend and would he like to come over and hang out with Daniel. I have to say, I don't know if I would have gotten around to actually calling her, but the accessibility of seeing her picture right there and the ease of clicking on "comment" and typing the question, made it simple. I didn't have time for the fear to rise in me. It's a dark cloud that I have. I don't know if all parents do, I assume so, but I have a feeling it is more prevalent when the child has a disability. It's a cloud within me that rises up. It makes me want to shield him and protect him from being hurt. It's like a monster because while protecting your child can be a good thing, it can also prevent you from pushing them forward and it can keep them from growing and progressing. That Dr. at the maize and blue university said, "you can keep these kids babies forever if you want, if you don't push them forward". That's always been in the back of my mind. I guess I did get something out of my hundreds and hundreds of dollars that day. . .

We got a very enthusiastic response from the mother and we had a tentative plan for a get together. I warned that Daniel might not last more than an hour or so, but that is a good start don't you think? Well today said friend came over. I thought the Wii would be a good equalizer. You can interact, and play against each other. I talked to Daniel ahead of time and told him, it's OK if he doesn't win. He tends to get upset when he doesn't win, and we are working on that. I'm happy to report that he was here for about an hour and a half. Daniel was more than done by then. Todd, my husband, spent most of the time with them, being near to help facilitate. He even gave up watching the second half of an MSU basketball game. Now that's love!

It was a very successful time. They spent about an hour with the Wii. They bowled. Then, said friend, asked to play tennis, to which Daniel agreed. He never plays tennis. How cool that he was willing to do something out of his norm to make his friend happy. That is actually taking someone elses point of view. What a huge step. When I was around them things were winding down and they boys were playing Rokenbok. I could tell Daniel was getting annoyed and he was talking in scripts, but that is why this kid is so great. He understands Daniel and doesn't get put off when Daniel starts talking video talk. He is happy just hanging with him and spending time. He asked him a question and as soon as he knew Daniel was starting to get annoyed he said, "should I put it back Daniel?" "Yes" he answered. Most kids don't have the incite to Daniel like that, except his brother. This kid has been his friend since 1st grade. He is always there for him. He religiously shows up for Daniel's friendship group. He was the first to respond when we had a birthday party when we invited his whole class. He is a friend in the truest sense of the word. What a blessing. I'm glad I made that leap. I knew he was ready.