Monday, August 29, 2011

Socks and Earthquakes

I have to laugh a little about this, in a "life is crazy" kind of way. Here the entire east coast has been focusing on earthquakes and hurricanes this past week, and I am distracted and delighted by the fact that Lilli is almost pulling up her own socks. But life is about the little stuff too. Lilli has taught me much about appreciating the little things in life.

Last week was our first full week, from 9 to 5:15 every day. With the ABA therapist, Lilli worked on sign language, typing the words "star" and "bus," pulling up her own socks and pants, and matching objects. She worked on new websites with the teacher, matching letters and typing short words. Pretty much everything is done "hand-over-hand" - we take her hand and make her hand do it with ours - with the hope that Lilli will eventually learn to do it herself.

It was a fantastic, exhausting, whirlwind of a week. Chloe started 4k, and Josh is, well he is just an 18 month old maniac. I adore Lilli's therapist that comes every day. Her homebound teacher is sweet and wonderful with Lilli. I am so excited about getting this much help for her. By Friday I was drained, but in a good way.

There was a time when I was worried about Lilli not getting what she needed in her education. There are so many factors in getting the right balance of everything for a child with special needs. Having Lilli learn at home is the right thing for her right now. But I could never do a good job by myself. I know what to do, but I need people to help me to do it. I have two other children who need my attention for much of the day. I spend time cooking every day just for Lilli's special diet. Potty training has been a very challenging ordeal so far. Lilli can do very little for herself. I cannot stress how very blessed we are to have ABA therapy in our home each day.

I think my favorite moment of this past week was when I was helping Lilli put her socks on at the end of the week. She had worked on it for days with the therapist. We put her sock on her foot for her, but then she has to reach down and grab it and pull it up. I put her sock on her foot and helped her position her hands around the top of the sock. She pulled it up herself and I cheered and clapped.

If you want to be humbled by how blessed you are to be a healthy, independent human being, come over and watch Lilli try to pull up her socks. We are blessed. When you put on your socks tomorrow morning, tell yourself, "I am blessed." Because you are. I told you, Lilli has taught me a lot.

By the way… I did not feel the earthquake, although a lot of people around here did. At the time, the therapist and I were getting Lilli ready to go outside to jump on the trampoline. We might have even been helping her to pull up her socks.




Monday, August 22, 2011

How to Greet a Child with Special Needs 101

Last week I took the kids and went to see my niece's new room at college. It was a risk. It was our last day before therapy began. I had to get us out of the house because it was 9 am and Josh was already trying to destroy something. I think he was beating on something with a wooden spoon and the banging made me decide to load them in the car and drive an hour away. When we arrived and started to walk across the lawn to the dorm, Lilli started to cry. She wailed all the way up the sidewalk, causing every head to turn in our direction. I pressed on, singing Twinkle Twinkle Little Star with no shame, to no avail. In the dorm, I took her on a walk down the hall to see if that would make her happy. She was so out of sorts. She just wanted to get out of there. Lilli is very upset by new situations, and we can't live our lives in a bubble (although I try sometimes.) So we have these experiences a lot when we go out in public. I am very used to stares. The sympathetic stares, the your-child-is-too-loud stares, the your-child-is-spoiled-and-should-be-punished stares, the what-is-wrong-with-her stares, and the why-are-your-torturing-your-child stares. I don't care about the stares. I focus on Lilli and I ignore them.

And then… here came the girl that made my day. A college-age girl slowly made her way down the hall with those metal crutches that have cuffs around the tops for arms. I don't know what to call them, I just knew instantly that this girl had a disability. She smiled sweetly at us as we got closer, despite the fact that Lilli was sobbing uncontrollably.

Then she did something that rarely happens to us. She looked right at Lilli and said –directly to Lilli- "What's your name?"

I did what I always do. I waited a beat, and then I looked at Lilli and said, "Say, 'My name's Lilli. I'm still learning to talk.'" I looked up at the girl and smiled. She smiled at me and looked right back at Lilli and said, "Lilli, that's a beautiful name!"

I looked at Lilli and squeezed her hand and said, "Did you hear that Lilli? She said you have a beautiful name!"

And Lilli smiled.

That simple, typical nice gesture from a stranger, meant the world to me. That girl "gets it." She knows what it's like to have people stare, or look away in discomfort, or not know what to do or say because they see her disability first and not her. She got it. So when she saw Lilli, she knew exactly what to do. And it blessed me so much.

I was inspired to write this post by a new very special friend of mine. She mentioned that people often ignore her child because she is in a wheelchair and does not talk. My goal is to help people know what to do when meeting kids who have special needs. It really is very simple. Focus on the person, not the disability.

I think of how different people have reacted when meeting Lilli for the first time. Many are unsure of how to interact with Lilli because she does not talk, and she does not always make eye contact. It really does make it difficult to try and hold a one-sided conversation with someone who does not talk back or look at you. But you never can tell what that child is thinking, how much he or she understands, and how aware they are of what goes on around them. This is a child, a real person with thoughts and feelings.

I know what it's like because before I had Lilli, I experienced that uncomfortable feeling myself from time to time around people with various disabilities. If you are not used to it, it can be overwhelming. You don't know what to do or say. So maybe you do and say nothing. Now that I have Lilli I know what's like to be the people who are stared at in the mall, or to have people make a big deal out of my other two children but act as if Lilli is invisible. It's tough. It hurts. Let me help you if you are ever in a situation where you interact with or meet a child with special needs.

Let's start with the negative and end with the positive. We have personally experienced the following negative interactions with both strangers and people we know:

Ignoring Lilli and talking to us as if she was not there

Staring at Lilli with looks of disgust, pity, or just obvious discomfort

Talking about Lilli in a negative way in front of her, as if she could not hear or understand

Talking to Lilli in a loud, you-don't-understand-very-well kind of voice

Not including Lilli in certain activities because they figure it won't matter to her anyway

We have experienced the following positive interactions with both strangers and people we know:

Getting down on Lilli's level to say hi to her and play with her

Talking directly to her in a way you would talk to any kid her age – complimenting her, etc

Praising Lilli's accomplishments to us in front of her so she can hear it

Giving Lilli thoughtful gifts and not being insulted when she pays no attention to it at the time

Getting hugged, kissed, drooled on or pulled on by Lilli and being a good sport about it

Every child is a gift from God. If a child's special needs or disability makes you feel uncomfortable, here is my cheesy, rhyming list of three things you can remember the next time you see that child:

  1. Forget the "rules."
  2. Get over the drool
  3. Talk about school
Forget the rules. What I mean by that is forget that some expert or some stupid assessment scored that child as having the mind of a six month old. There is no assessment that can tell you what is going on in the mind of a child who has autism or is non verbal. This is a valuable human being, with a personality, preferences, and a need for love and attention just like every other person on the planet.

Get over the drool. Um, some people let their dogs or even their cats lick their faces and share their ice cream cones with them. People have no problem with an animal's saliva but somehow another human being's drool is gross. If a child with special needs is drooling or doing something else that makes you feel uncomfortable you need to look at the person, not the drool, and get the heck over it. Look at the person, not the wheelchair. At this child, not the part of their body or face that does not "look quite right" to you. Look at the person, not the disability.

Talk about school. Can't think of what to say? Almost all kids go to school. That's an easy place to start. Where do they go? What grade are they in? Even though Lilli is homebound, she still has a teacher and school. If the child cannot talk, just include the parent in the conversation. Then you can make a comment to the child. Here is an example:

Visitor: "Oh, Lilli you are getting so big! What grade are you in now?" (looks at me for the response)
Me: "Lilli's in second grade now."
Visitor (looking right at Lilli) "Wow, a big second grader. You're really growing up. I hope you have a nice teacher this year!"
Compliments are easy too. They do not require a verbal response, and they make the child feel good and included in the visit.

It means a lot to Lilli, I know. I have seen it happen many times. If a person does not talk to Lilli or get down on her level, she will ignore them. They night as well be a piece of furniture in the room. But when people talk to Lilli, she might not look at them but I can tell she is listening. She will smile, laugh, and sometimes she puts her hand on her neck. It is a gesture I see when it seems like she wants to say something, but she knows she can't talk to get it out. Lilli loves to have people pay attention to her.

She can't talk, and she sometimes drools. But she is a beautiful, special little girl who deserves to be a part of the conversation just like everyone else.

Wednesday, August 17, 2011

How the Heck am I Going to Do This?

I'm thinking of that cliché "It takes a village to raise a child," and I'm making up my own: "It takes a circus to help a child with special needs."

I felt like the ringmaster today.

Well OK, it is not that bad. But if you ask my sister or niece who were visiting today, they would tell you it was crazy. Thank goodness they were here. This morning they helped me run around the house and clean it up to make it look like no one really lives here. Then after dressing the kids and breakfast (and I actually got a shower because they watched the kids!) the doorbell started ringing. One therapist. Then another therapist. Then the new nurse who is still learning the ropes so that I can eventually leave Lilli with her for an hour or two. Then a home visit from 3 teachers from Chloe's new school. A few hours later they all left. (We are still on a shortened, introductory schedule with the therapist.)

I had one hour in-between people coming. I took my sister to the airport and on the way I whipped into the grocery store. She sat in the car with the three kids while I literally ran in and grabbed as much as I could in ten minutes flat. I know I could win on Supermarket Sweep. (Is that show even still around?) I dropped her off at the airport and cried halfway home. Then as I pulled in the driveway at precisely 3:15 with five bags of groceries to unload along with three shoeless kids, the homebound teacher was already at my house waiting. Lilli was a trooper and worked with the (also new) homebound teacher for two hours while I put away groceries, fed the other two kids, and ate a sandwich for my late lunch.

Said goodbye and thank you to the homebound teacher at 5:15. By the time my husband came home I was ready to run. I probably should have literally taken a run around the block. I grabbed the keys and told my husband I needed to get out of the house for a little while. I tried to think of some good place to go and regroup, to get rejuvenated. But instead I went to CVS and looked at ridiculously expensive sunglasses that I did not buy, then went to the library and checked out two more books that I will not read. I actually felt refreshed after that. So I decided to go back home. I said to my husband who had thankfully fed all three kids and started baths, "I don't know how I'm going to do this all year long." This is hard! If anyone reading this is confused as to what is so hard about it, I guess you'd just have to experience it for a day and you would know. Well, really you would only need to sit on my couch for a few hours and watch.

It will get easier. I have spent a lot of time getting everyone acquainted with Lilli. I have done a lot of explaining and demonstrating. I have also done a lot of apologizing for my dirty, cluttery house. They will get used to Lilli. They will get used to the dirt and clutter too I guess. And I will get used to this new "public" life hopefully in a few weeks. There are definitely pros to having people come in your house all the time. It makes you clean! After watching three people try to shove their lunches and drinks into my deplorable fridge today, I cleaned it out.

Even though I am thoroughly enjoying my alone time at almost midnight with everyone asleep but me, I'd better get to bed. Soon it will be time to start the circus all over again.



Wednesday, August 10, 2011

“Therapy Traffic-Controller”

This is the week we have been waiting for. In-home ABA therapy started this week. (ABA stands for Applied Behavior Analysis). We tried it in Virginia, our friends and family will remember. It helped Lilli more than anything else. But it was expensive. It costs thousands of dollars. And for anyone who does not know much about this, there are many, many parents of kids with autism who scrape up every dime and take out loans to get this therapy.

ABA therapy is what the doctor recommended to us 3 years ago, when Lilli was diagnosed at the age of four: "30 or more hours a week of ABA therapy." And no, it is not covered by insurance. Now ask yourself how come a doctor recommends a therapy that is so difficult to get, but has such great results? Why isn't this ABA therapy widely available to kids with autism? A mystery and a problem. I discovered it is even a "taboo" term in some public schools. They do not want to pay for it, I guess. (Shhh! Don't talk about it and maybe the parents will never find out about it!) But here in South Carolina, you can get it for free through a waiver. You fill out a ton of paperwork and get on a waiting list for a few years. And now, here we are at the top of the list. WOW!! I am so excited about it. It took a few years but we finally got it. Lilli will get the therapy until she is ten. Then she ages out of the waiver program.

This is definitely a life change for me. I need a new job title. I will morph from a "stay at home mom" into something more. There is a list of people that will be coming into our home every week to work with Lilli from 9am to 5pm. A lead therapist. A line therapist. A homebound teacher from the school district. Occasionally, the supervisor for the therapists. And of course the new nurse, who I started training today. And occasionally, her supervisor. I feel like a…traffic controller of some kind with all of them and the three kids. Josh, Mr. Social get in the middle of everything, is a tough one but he does still nap. Chloe must be so confused. I have to keep telling her that these people are here to work with Lilli, not to watch her "Nutcracker Show" or "Disney Show" or whatever show she is putting on. She runs back in her room and puts on her prettiest dress up princess outfit and tries to get their attention by dancing around and talking about Disney World. I have to keep Chloe and Josh occupied and away from the therapists. By the time Josh goes down for a nap at noon I am sweating. It's only been three days and already I have eaten less and I am mentally exhausted from the additional multi-tasking. You would think I would be getting a break while other people are working with my daughter. Mmmm… not really.

I have so much hope for the coming weeks and months. We have goals set for Lilli. We have great technology provided to us from the school district. We have a crazy, 9 to 5 schedule of people working with Lilli every day. We are digging in and we are getting ready to see how this will help Lilli.

I will just need a little more coffee and some protein bars, that's all.

Friday, August 5, 2011

Disney World- Chloe’s Blessing to Lilli

Chloe wanted to go to Disney World. She begged me every day for over a year. My answer was always the same: "Your Daddy is in school. We don't have the money, it's too far away, we'll go after he graduates in a few years." I'm very straight forward with my kids. Then I always followed up with: "But…God can do anything. So ask Him. If God wants to send us to Disney World right now, He will make a way for us to go."

I meant it. I could not figure out how we could make a trip to DW happen, for so many reasons! Finances being one, but Lilli and all of her needs being the close second reason. But I believe- based on personal experience- that God answers the prayers of young children. Their hearts are pure. Their faith is new and they believe in princess dreams coming true, santa claus, and wishing on stars. I find it a challenge to help Chloe distinguish between real and imaginary, but she is just starting to understand that while those things are fun, God is REAL.

So she prayed. Every day. With absolute determination and sincerity. I never expected Chloe's prayers to be answered so soon, and I never dreamed of how they would be answered.

Through a series of unbelievable circumstances that could only have been coordinated in heaven, we were blessed with a virtually free trip to Disney World. The details would amaze you. It was last minute. It was…crazy. Pretty much like everything else in my world, I immediately thought of how Lilli would handle it. And I confess I even thought at one point we should not go, because Lilli might cry the entire time and ruin the trip. I know that is awful of me. Austim is the ultimate mystery, always bringing the unexpected and most of the time, uncontrollable behavior. I credit my incredible niece Caitlin for encouraging me and helping us to make this trip happen, despite my fears.

I got busy making phone calls and researching about our special needs: a fridge and microwave for Lilli's special diet food, which kind of stroller to take for her in the park, how to handle the waiting in line for rides. I Googled and found a website that is just for kids with autism going to Disney World: I printed out two social stories and made books for Lilli about driving to DW and waiting in line for rides. (She could have cared less about them). The Unofficial Guide to Walt Disney World was a very helpful book that I found at the library. I decided this would be different than the wedding experience, that I would PREPARE her. So every day when Chloe was out of earshot, I whispered secrets to Lilli about Disney World. "We are going to a special, magical place called Disney World, you will love it! Shhh, don't tell Chloe!" I would say. Lilli can't talk, so I didn't have to worry. Lilli would smile and kiss me whenever I told her these secrets. I told her everything I could think of about what the trip would be like. I wanted to surprise Chloe, but prepare Lilli. And I prayed that Lilli would be happy on the trip so that we could all be happy.

I discovered that Disney World is even more awesome than I realized because they totally accommodate kids with autism. Or anyone with special needs, for that matter. We got a special pass when we first arrived, and we never waited more than ten minutes for a ride. This was fortunate because Lilli could not have made it any longer than that. There were special places for us to wait in some cases. We changed and let Lilli nap at the wonderful first aid station. Lilli loved almost every ride. She tried to get out of the boat on the Pirates of Carribbean, but she was not very interested in that ride. Caitlin flew down to help us which was necessary in many ways. Each kid had an adult to hold them on a ride, watch them, or push them in the stroller.

At the end of the first day, we stood in front of the castle and watched the light show and fireworks. Several people have asked me if I saw Tinkerbell fly down from the castle, but I missed that part. I had my back turned to the castle because I was watching my kids' faces instead. That was a better show for me. I was smiling with tears of joy as I watched Lilli watch the show. She loved Disney World. She was happy almost the entire trip. It was an answer to prayer, and it was a dream come true for all of us. I am so glad I did not keep our family from experiencing Disney World because of my fears about Lilli's reactions. And I am most of all thankful for the innocent prayers of a sweet younger sister.

Wednesday, August 3, 2011

Toothpaste on my Bed and Spoons in the Hamper

"Baby proofing" is not the right word to describe my problem. We are talking about a tall 7 year old child with special needs and mischievous curiosity. This is the next level.

Just scrubbed some more toothpaste out of the carpet the other day. I was folding laundry when I heard Chloe yell, "MOM!!! Lilli has the toothpaste again!" She had it in her hair and all over her face, arms, and legs. Oh joy.

Lilli is into toothpaste and spoons. I recently found a spoon at the bottom of the laundry hamper. Yuck. We find them all over the house. I found one in my bathroom sink. (With the water running on top of it, and a completely wet spare toilet paper roll in the middle of a puddle on the bathroom floor.) The other night I pulled the covers back to get into bed, and there lay: you guessed it, a spoon. What can I do about this? She gets into the silverware drawer. If there are no more spoons, she moves onto forks. I am afraid someday it might be knives. How do you move an entire silverware drawer up out of a 7 year old's reach? You think it sounds easy. But it's not just the silverware.

The spoons are better than the toothpaste. I hate finding toothpaste squirted out on my bed, which unfortunately happens several times a week. I hide the toothpaste in different places. She always finds it. She is very determined and I am not a very clever hider. I can totally handle my 17 month old. Well, I take that back. He is really giving me a run for my money. Between the two of them, Mr. short, "Destroy everything" Josh and tall "Long Arms" Lilli, I am chasing, "No No!"-ing, and cleaning all day most days. But Lilli is not a typical childproofing case. She has moved on to things I don't think to "baby-proof." I guess I should call it "Lilli-proofing."

Lilli is 7, and every year she gets stronger and can reach more things. Recently she learned to open the refrigerator door, and she just looks inside, then walks away, leaving it wide open. You know how things can kind of sneak up on you when you have a growing child? For example all of the sudden your toddler figures out how to push a chair over to the table to climb up onto it. From that day on, you can't leave anything spillable, or breakable, or even remotely important on the kitchen table until he or she grows out of this phase. And that is the key. They do grow out of it. At least I think they do. I only have one child to test this theory on so far: Chloe. She goes through phases like she goes through her dress up outfits all day. I can sigh and tell myself that she will grow out of it hopefully soon.

But with Lilli, the phase drags on…and on… and on. And she gets taller, and better at it. The toothpaste phase has been about 2 years now. Nevermind the fact that she does not have the fine motor skills to unscrew the tiny cap. She bites a hole in the side of the tube and squeezes it out the sides. If I move the spoons, I know she will find them. She is reaching up to open the toaster oven door now. She knows how to turn on the faucets and leave them running. And my biggest problem of all: she can open doors. The irony is that a few years ago I was asking the therapists to help Lilli learn how to turn doorknobs and faucets, so she could become more independent and do things herself. Now she goes into my bedroom, opens the bathroom door, turns on the faucet, and makes a huge wet mess. And it happens almost every day. I do have those babyproof doorknob covers on some of the doors. We hate those things. And the kicker is they only work if we all remember to actually shut the door.

I should be excited that Lilli has learned to do these new things. And in a way, I am. I am thrilled that she is progressing in her self-help skills and can open doors by herself. But I am terrified that she will now use that skill to open our front door, walk out into the street, and keep on walking. I can't reason with her, threaten her, bribe her, or make rules with consequences like I can with Chloe. Lilli has no sense of danger. She has no concern of getting lost. She would walk away from me and never turn around to see where I am. We can't discuss these things. I just have to watch her 24/7 and try to prevent anything crazy from happening.

I wonder where we will be in a few years, when she is even taller and faster. I wonder if I will long for the "easy years" of toothpaste on my bed and a spoon in the laundry.