Experimental Trip to the Symphony

I have a sense of humor about this. I probably should not have done it, but then I never would have known.

I took Lilli to the symphony.

It was just the two of us. We got all dressed up. Well, as dressy as possible for us. Lilli wore white running shoes with her black dress, but I didn't see the fashion police there so it was OK. Jasen took our picture together before we left.

I could tell Lilli was excited. She was in a great mood, kissing her hands, waving them in the air and making happy sounds as we rode in the car. I talked to her about what it would be like, and how she should act. This was a special night for us.

When we arrived, I took our time. I didn't want her to be overwhelmed by a crowd of people, so I thought it would be better to wait and go in a few minutes late. She sometimes gets anxious when a lot of people are around, and all the talking and noise could set her off crying and wanting to escape. She held my hand and bounced with happiness down the empty sidewalk in the dark. Lilli's happy walk is like a little dance. It's hard to describe but it's a whole-body-happy wiggle-shake kind of move.

We entered an empty lobby. Perfect. Well, you really should never show up to the symphony late. But you can see my reasoning. Since it had already started, we had to wait until they were finished with the first movement before we could go in and sit down. The sweet young girl handing out programs explained she did not want us to be a disruption.

"That's fine, we'll just take a little walk," I said. No problem, I thought. I was glad Lilli was in "quiet – happy mode." Just as long as she didn't turn the volume up to her "squeal-clap-happy mode," we would be just fine. My plan was to slip quickly into the last row as soon as we heard polite applause.

I'd had a little dilemma about whether or not to put her in a stroller. I decided to brave it without one, thinking Lilli could just sit in my lap. That way I could hug her arms and hopefully keep her from clapping when I felt her get the urge during inappropriate times. It turned out to be a good decision, because the old building was not handicap accessible. Hard to believe in this day and age in our country, but we encounter that problem a lot.

The beautiful carpeted staircases turned out to be our downfall. As we walked around the upstairs lobby outside the doors to the auditorium, Lilli spied the staircase to the balcony. It was roped off, and again the young girl at the door explained, sorry, the balcony was closed tonight. Lilli dropped to the floor as those words were still coming out of her mouth, and crawled under the velvet ropes. Lilli really loves steps. When she sees steps, she is compelled to go up them, no matter what. I got down and pulled her out and tried to make her stand up. Wow, is she strong.

"Listen, Lilli, do you hear the symphony? Listen to the different instruments!" I tried to distract her and led her away from the balcony staircase. We took a few laps back and forth and looked over the railing to the first floor lobby. Lilli's happy walk turned into happy stomping, which made a "neat" echo-y sound. It is difficult to keep a child from stomping, I discovered. Even harder to tell a child with autism to be quiet. There were staircases to the downstairs and balcony on both ends: four sets total. I was beginning to get a teeny bit tense.

Finally we heard applause! I scooped her up and carried her in. With one swift movement I sat down in the last row in the corner, with her on my lap. I breathed a sigh of relief and looked around. What? The performers were all getting up and walking off the stage! The house lights came up. I guess there was an intermission already. We sat and Lilli squirmed as I tried to keep her occupied. I pointed out some of the instruments on the stage. I whispered Twinkle Twinkle Little Star until she started giggling. I kissed her and told her that I was proud of her and she had to be super quiet when the music started again.

After what seemed like an endless intermission, the lights went down and everyone walked out on stage. As the audience clapped for the conductor, Lilli sat up straight and clapped with delight.

Here goes, I thought.

She was preoccupied with a loose thread on her sleeve for a few seconds, and then the music started. She popped up her head and looked at the stage. Instantly her hands flew up in the air and started flapping as the music swelled majestically. She loved it!

And then, she squealed.

It was a little squeal. I think she just could not help herself. I shushed her and hugged her into my lap. She made a kiss sound. Yikes, we've only been here for about twenty seconds, I thought.

As the music built to a powerful crescendo, she swayed back and forth and I relaxed a little. Abruptly, the music stopped. Silence. As the conductor froze his hands in the air, you could hear nothing, for about two beats. I held my breath. At that instant, Lilli quickly slipped her arms out of my grasp and clapped. Four quick claps.

The music started again. Instead of sliding down in our seat to the floor in embarassment, I swept her up and got out of there, fast. All in all, I think we indulged in about two minutes of the symphony. Possibly less.

Some people might think, who cares? You should have stayed. No, that would have been very disruptive and rude. It wasn't like we were in church with a baby making a little noise during the sermon. It was the symphony. I did not see any other children there. Certainly not any other children clapping and squealing. Others might think, you never should have taken her in the first place, what did you expect?

The reason I took her is because I had to know. I had to know how she would tolerate it. I knew she would love it. She loves classical music. But we are taking Chloe to see the Nutcracker in a few weeks, and I had been wrestling with the idea of taking Lilli too. Again with the mother guilt. Lilli loves the Nutcracker music. I knew she would be excited to be there with us, and would probably do fine sitting in our laps. But I wanted to know how she would act. I had a feeling she would not be able to contain herself and make disruptive sounds, but I had to try it. So I took her to the same exact place where we will be going to the Nutcracker in a few weeks. I thought, what better experiment than to slip in to a free admission symphony performance and see how she does for a few minutes? Well, now I know. She is not ready to go to the Nutcracker just yet. Maybe a minute or two of the performance, but not two hours. And that's OK. She did not have a meltdown, and she did not cry or run away from me. She was happy about the whole, brief experience.

Baby steps.

I understand why parents of children with autism yearn so much for "autism-friendly" shows. I hope to hear about one and take Lilli someday soon. I know she would love a first trip to the movies, a play, or a trip to the symphony where she could be free to let out the happy squeals and claps.

When we take Chloe to the Nutcracker in a few weeks, I will not feel guilty about leaving Lilli behind. Instead I will feel hope that someday I can either take her to an "autism-friendly" performance of the Nutcracker, or that she will eventually gain some self-control and be able to sit appropriately for the show.

For now, I will just have to play loud symphony music in our living room.

I Think She Just Said “Hi”

We are in an odd place right now. The rest of the world might think I am deluded. And maybe I am. But if I am, then so is the ABA therapist, and the teacher too. Lilli is really learning how to spell and type by herself. I don't know why I am so incredulous some days. I was the one who believed she could do it in the first place.

Last night, I was sitting with her on the couch. Jasen had the other two kids playing outside, and Lilli and I were having a rare quiet moment together. I bought a few new apps and I was teaching them to her, hand over hand. It was enjoyable for both of us, because she craves alone time with me but gets interrupted so often by her siblings. I pulled up Proloquo2go (her communication app) and typed out a few words and sentences. I helped Lilli type a few words she knows well. Then I said, "Ok Lilli, you type something to me. Anything you want to say. Go ahead!"

I held her arm, but not her hand. Try to imagine if you were loosely holding someone's arm as they type. Would you be able to control the letters they type? Maybe you could control their arm to a general area of the keyboard, but think about this. The keyboard on the Proloquo app is slightly smaller than the keyboard on our laptop. And, it's a flat screen. Pretty hard to have someone type a word correctly unless you have their actual hand, or fingers.

She typed the word "hi." Then she hit the "speak" button.

I said, "Hi! Wow Lilli, you said hi to me! Good job!" But I thought it was chance. A nice accident. H and i are near each other. I'll take it, I thought. Even if it was a happy mistake, I want to encourage her.

"Type something else, Lilli!" and I took her arm again.

Again she typed "hi."Then moved up to the speak button. I instantly started to second guess and wondered if I had made her do it. But as I said before, it is pretty hard to lead her fingers to the "h" and the "i" while loosely holding the middle of her arm. Then there is the clear movement of her arm away from the keyboard up to the speak button, which signals that she knows the word is complete.

Up until now there have been many of these moments where all of us are thinking Lilli is typing on her own but with our slight guidance. I don't care for this analogy, but it seems a little like the ouija board experience, where you cannot tell whose hand is making it move. But this is, uh, pretty different, because there is no chance that an evil spirit is typing the answers here.

The difference last night was the fact that I did not know what she was going to type before she did it. We are usually telling her what words to type. For example, before she typed "hi," I had typed the word "bird" and helped her copy it. She could see how to spell "bird" because I typed it first and put it up top. But when she typed "hi" I had no idea what she was going to say. Twice.

I said we were doing this with faith. I wonder why it is so surprising sometimes when our prayers DO get answered. Even big ones that seem impossible. I'm so glad our God specializes in making the seemingly impossible things become possible.







 

Looking Back to find Hope

One thing I have done to encourage myself and find hope for the future is to look back and see how far we have come. I often say to people who are getting to know Lilli, "You should have seen her this time last year," or "She has come such a long way." It's different than my other two children, who I expect to continually make progress like any typical kid. With Lilli, it is a surprise, and sometimes an unexpected miracle. I have to remind people that the doctors did tell us she would never walk, or talk.

When I looked back over the last four, busy weeks since I posted, I realized we have done a lot this fall. It made me think of what things were like last fall.

This time last year, Lilli was using her PECS books with Velcro pictures, and going to public school. We were on the waiting list for ABA therapy. We had no way of knowing how much Lilli knew or understood about letters or reading. She could not do any computer activities by herself.

Now, she is learning at home with an ipad provided by the school, and has an ABA therapist and a homebound teacher to teach her. She can do Starfall by herself, and now does the "Elmo Loves ABCs" app by herself. She is showing us daily that she knows her letters through the ipad. The Elmo app has a "letter quiz" where Lilli has to touch the letter Elmo says. She is getting them correct and we are ecstatic about it! Lilli's progress with her ipad has been amazing. At least once a day I think the same thought: "I wish I could write about this." Well, at least I don't have writer's block. It is a different kind of writer's block. I am literally blocked from writing on my computer by the bodies of my children.

I thought I would show a few pictures of what our past few weeks have been like.

Lilli is typing the word "bird" almost by herself!

Here is Lilli typing the word "bird" on her ipad with her teacher, Leslie. In the past few weeks, two major things happened. The first thing was that both the teacher and the therapist told me they felt like Lilli was really starting to lead their hands to the right letters when typing certain words. We labeled things around the house and began to have Lilli type about everything. Sometimes she seemed to already know how to spell the words, and led our hands to some of the letters.

The second thing that happened as a result of the first, was the idea that we "wean" Lilli off of holding our fingers while typing. It was Morgan, the ABA therapist's, idea that we have Lilli hold something in her hand while typing. We would hold onto the object too, but gradually fade away from guiding Lilli's hand. Lilli has a lot of "moral support" needs going on. She thinks she needs help more than she actually does in some cases. In this picture Lilli is holding a rubber stick (we used to use it for a handle for utensils when feeding her) and the teacher is only touching the bottom with her finger. Lilli can see out of the corner of her eye that the teacher's hand and arm are there. But really, she is typing the letters correctly on her own. When she is ready, we will start to take our fingers off the end of the "stick." Is it tricking her? Kind of. But in a good way!

This October we went as a family to visit a farm with a pumpkin patch. We went to the same place last October. I looked to see if I had taken pictures last year, but I could not find any. I probably did not even take any pictures because it was such a bummer of an experience last year. Jasen says I can be too negative about things sometimes. But honestly all I remember about the trip to the pumpkin patch last year was Lilli standing in the middle of it, screaming and sobbing, while tons of people around us stared, and we tried to gently hurry-up our little Chloe. Chloe was thrilled about picking her very own pumpkin, and took her time in choosing the perfect one. I was completely stressed out by Lilli's crying. Sometimes she has this guttural, angry, growly cry when she is overwhelmed. It was very obvious she absolutely hated the whole pumpkin patch experience. It's almost funny now, to think of how happy and naïve we were as we piled in the car to go to the pumpkin patch for the very first time as a family. It was not the fun/togetherness-experience we had imagined. I don't think Chloe really noticed too much. She was so happy about that pumpkin. But Jasen and I drove home in silence, depressed that Lilli could not handle what we thought would be a simple, fun outing.

This year, we were more prepared. Physically, and mentally. Would it have been easier to just to split up and have one of us stay home with Lilli? Sure. But we do want to try to do things as a family. It is usually a gamble for how it will go. This time, my niece Kelley went with us, and it reminded me that it is always good to have one adult per kid when you go on a family outing. Once again, Lilli got upset. It can be an overwhelming place, with all the people, noise, and busy activity. But we handled it differently than we did last year. My husband took Lilli on a walk out by the cornfield, away from all the noise and kids. When we tried to take her to the pumpkin patch, she got stressed again, so he took her somewhere else while Chloe chose her pumpkin. My niece, Kelley, helped me with Josh and Chloe. Meanwhile Jasen found the perfect way to calm Lilli – the water falling from the kids' gem mine activity. The pictures I got were priceless: Jasen taking a calm walk with Lilli, Chloe and Josh playing, Chloe having a meltdown because we told her it was time to go next to Lilli happily playing with the falling water.

Lilli takes a calm walk with Daddy away from all the people and noise.

Chloe: "I don't want to go!" Lilli is thinking: "I could stay here all day and play with this water."

We didn't get the family picture last year...an improvement this year!

"Cousin Kelley" (Chloe calls her that), Josh and Chloe

Trick or treating was…just OK. As I took pictures of the kids on the couch before we left the house, we noticed Lilli did not look well. I snapped a few pictures and said, "Jasen, she looks like she feels sick." She started to have a seizure. We did eventually go out trick or treating and pushed Lilli in her stroller, but she did not seem to enjoy it like she did last year. We had to split up and Jasen took Lilli back home while I took the other two around. Halloween is just not the event for Lilli. She can't even eat the candy, and does not enjoy dressing up…so, it's almost like torture. We look at it as a chance to take a family walk around the neighborhood (in the dark). However, this year she did do something that impressed us. Jasen pulled her out of the stroller and helped her walk up the steps to a lot of the houses and greet the people at their door. At one house, he stood behind her and said, "Lilli, say 'Trick or treat!" We know she can't say it, but we still prompt her like we prompt Josh, who is also learning to communicate. Lilli took her hand and made a sign. Jasen looked at me and said, "What does that mean?" I smiled and said, "I think that is the sign for 'stairs'." Well, she had just walked up stairs, and she doesn't know how to sign "trick or treat," so we thought that was great. Plus, she probably just wanted to walk back down them and leave since she wasn't into the whole activity. Hey, that's progress! She didn't sign last year.

Lion, Rapunzel, and Mulan.

What I continue to learn as Lilli's mom is that we can do things together as a family, but we just have to do things a little differently to help it be enjoyable. Some people say you should let the past go and move on. But I have to keep looking back, because it gives me incredible hope for what is to come. This is not all there is. There will be much more, and I look forward to the surprises and miracles in the future.

The “Special” Lives of Siblings

Chloe held a fat preschool pencil in one hand and a notebook in the other. "Mommy, I have to make a list in my 'Handy-Dandy Notebook!'" she exclaimed. (That's a term from Blue's Clues in case you didn't know.) She can write the letters by herself, she just needs me to spell the words for her.

"Mommy, how do you write the word 'therapy'?"

That's right. My five year old asked me to spell the word "therapy." I spelled it, and she wrote it neatly in her tiny spiral-bound notebook.

Chloe just turned five in September. A few weeks ago, she drew a very detailed picture and presented it to me. "It's Lilli having therapy! See, that's Lilli and that's the potty, and that's the tv and the movies, and that's the therapist saying, "Yay Lilli!" I stared at it, speechless.

When Chloe was three she once drew a picture and held it out to me proudly. "Look, Mommy, I drew Diastat!"

Diastat is Lilli's emergency seizure medication that comes in a plastic box that we carry with us everywhere we go. What three year old draws a picture of seizure medication?

She actually has asked me on multiple occasions, "Mommy, do you have the Diastat? Don't forget it!" She has only seen Lilli have a few seizures. We have tried to shelter her from that because it is scary. One time I was alone and I needed her help while Lilli was having one. After that she started to pray, "God please don't let me have a seizure," in her bedtime prayers and I had to explain that not everybody has seizures.

What a "different" kind of life a sibling of a child with special needs lives. It's not necessarily bad. There are a lot of great learning experiences and opportunities for discussion about differences and helping others. In the past, people have commented to me, "Wow, Chloe is going to grow up with a wonderful sense of compassion and awareness for others' needs. She will have a depth to her that most kids do not have because of Lilli's disabilities." I pray that is true for both of Lilli's siblings, Josh and Chloe. I think anyone could list positive character qualities that a sibling might have instilled in them as they grow. I am not sure I can eloquently sum up this difference. I have actually been writing and changing this particular post for over a month. I have found it very difficult to be succinct because there are so many facets to the sibling's situation. Siblings of children with special needs do have a very different home life experience than children who don't have a sibling with special needs. I am just going to highlight several issues we have experienced personally:

1. Siblings can pick up undesirable behaviors from their siblings who have special needs.
   
2. Siblings are often asked to be responsible for tasks that a "typical" child is not asked to do, simply because the parent needs an extra set of hands.
   
3. Siblings often miss out on experiences or activities because of the health, behavior of their special needs sibling, or handicap inaccessibility, or simply lack of childcare or help.
   
4. Siblings often endure countless hours in waiting rooms of doctor's offices and therapy clinics.
   
5. Siblings sometimes have their wants or needs pushed to the "bottom of the list" because the child with special needs' needs are greater.
   
6. Siblings sometimes feel ignored by their parents because their parents are so focused on medical issues, therapy, etc.
   

I never want Josh and Chloe to feel slighted because their sister's special needs demand so much from all of us. But unfortunately it does happen to siblings in family situations like ours. This subject is on my mind constantly. I honestly ponder it and make decisions based on it every single day. It is by far one of my biggest challenges as a mom.

Picking up undesirable behaviors is at the forefront of my mind right now because I am seeing it every day. Lilli, being the oldest child, is the role model. It is just natural for Josh and Chloe to watch Lilli and see what she does, and see our response to her behaviors. It is a tricky thing to handle as a parent. A few nights ago, 19 month old Josh came over to me and grabbed my hand. He pulled on it until I got up from my chair. He then proceeded to drag me to the television, look at it, and make a "M-M-M" sound by clapping his hand over his mouth. Oh my goodness, that was a total "Lilli move." He also grabbed my hand and pulled me to the cabinet to ask me for a cheesepuff. Anyone who has ever been to my house even once has been pulled to this cabinet by Lilli for a cheesepuff. It has been a hard habit to break and she is getting strong.

Josh watches her all day and copies her. Some things are good. He is learning sign language. But overall, it is not really a great thing. I don't want him to watch her struggle to use a fork to eat, I don't want him to see how she still needs help getting dressed and makes no attempt to bathe herself or use the potty. I don't want him to observe how she drags people to things she wants and whines when she can't communicate. Why? Because he copies her. And we are fortunate. Think of the families who have children that hit themselves, bang their heads on the floor, or run away. What do those siblings think and copy?

In the past two years that Chloe has gone to preschool, I found myself explaining to the teachers that Chloe had a special needs sibling as a role model, and she desperately needed to be around other "typically developing" kids. Lilli ignored Chloe and never acknowledged her, let alone play with her. Chloe didn't know how to eat like a normal kid. She watched us spoon feed Lilli puree food all day long for years. The light bulb went on for her when I sent her to a friend's house and she ate snacks and chatted with other girls her age for a few weeks. After that, her language skills took off and she began to eat better. It is not like an only child who has no other children to watch. It is the fact that Chloe and Josh watch Lilli and copy her, and then we have to try and undo that and re-teach them the correct ways to act. At age three and four, it was difficult to explain to Chloe why Lilli is different, and that she was not allowed to act like that. Now that she is five we have had several talks about Lilli's differences. Chloe is starting to get it. But it is still tough.

Some things are just downright unfair.

I can think of dozens of examples that occur each day, and it hurts my heart to think about it.

Chloe finally realized that Lilli "gets" to sleep in our room with us because of her seizures, while she has to sleep in her own room across the hall.

We go to the library and Lilli starts to wail. I pressure Chloe and whisper urgently, "Hurry UP! Pick out a movie and let's GO 'cause your sister is losing it!"

The living room is a wreck from all three kids, and Chloe is the only one who cleans it up. Lilli won't or can't clean it up, depending on whether you look at her cerebral palsy or her autism, and Josh is too little to really help much. We are trying to teach him, but dropping a few Legos into a container is nothing compared to what Chloe does. It is just not fair and I know this.

I have taken all three of them places and asked Chloe to push Josh in his stroller so that I can push Lilli. Oh my goodness she is barely five. I actually have to depend on a five year old for help, every day. She holds doors open for me while I push Josh's stroller with one hand and guide Lilli with the other.

Chloe asks me if we can go certain places, do certain things. A lot of decisions depend on Lilli. I have too many examples to list.

Guilt? Yeah, I've got it.

We have missed many events because Lilli can't handle certain situations. We have left things early because of Lilli's meltdowns. I almost did not sign Chloe up for dance class because I could not figure out what I would do about Lilli. A few weeks ago I took Chloe to her first dance class. I sat in the second-story hall of the old house and waited while she and a dozen other little girls tapped loudly on hard wood floors and music blared from rooms around us. While I should have been excited that her little four year old dream of dancing was coming true, I hung my head and thought (loudly), "What am I doing? Why did I ever think I could do this?" I was worrying about the possibility that one day I might have to drag Lilli and Josh with us to dance in the event that my husband does not make it home early to watch them. I know Lilli would have a melt-down because of the noise.

The dysfunction of a mom of a special needs child. I think that I can't do things because of Lilli. Tragically, it sometimes keeps me from doing things for my other kids.

So how can others outside the home help?

Here are a few ways:

1. Ask the parents if you can invite their child to go with you to special events that the family would not typically attempt because of the child's special needs. For example, many kids with autism do not do well at the movie theater or ball games because of the overwhelming sensory experience. Can you believe that Chloe has never been to the movies? (Guilt!) Restaurants are a challenge for many reasons. Plays, concerts, the circus, most of these would be a case that we could not go as a whole family.
   
2. Offer to babysit the child with special needs so that both parents can take the siblings somewhere. A parent would be eternally grateful for the opportunity to take the other children somewhere they normally would not be able to go.
   
3. Pay special attention to the siblings and their accomplishments. Sometimes parents of kids with special needs are so wrapped up in the world of medicine, hospitals, feeding tubes, therapy and doctor appointments, or they are just plain sleep deprived, they have little energy left to focus on the things that are important to the siblings. Sometimes a parent has to miss big things. Jasen and I take turns a lot, but even that is hard. Jasen missed Chloe's Christmas play last year. Currently we are arguing over who gets to take Chloe to see the Nutcracker this year. I took her last year. We hope we can get the nurse to work so we can both go.
   

Many people have helped us in countless ways. I could write an endless list of how people have helped us personally with the "sibling" issues so far. I deeply appreciate when others help give attention to Josh and Chloe when I cannot. I hope this post inspires someone, somewhere to think of the siblings of a child with special needs, and their unique situation. Most of the time the focus is on the child with special needs. But the siblings of these children have special needs too.

Some links with helpful articles & ideas about this subject:

Check out this organization: http://www.siblingsupport.org/

A wonderful blog written by a mom of a child with special needs with tons of resources. Wow, this blog is a million times more informative than mine. She also has many great links to other resources about this subject. Highly recommended. Check it out: http://www.insight.org/library/articles/special-needs/challenges-of-siblings.html

Article: Group offers support to siblings of special-needs children http://www.recordnet.com/apps/pbcs.dll/article?AID=/20070515/A_LIFE/705150311