Thursday, February 21, 2013

Learning to Use a Voice

It is something we all have to do at some point in life. Literally, and figuratively. Actually, it might be more accurate to say that we have to do this at many different times throughout our lives. We have to learn that God gave us a voice, and we should use it. How we use it is the big question.

I was reminded last week about my own - figurative - voice. Here I spend all this time talking about Lilli's voice, and how she can't verbally talk but she has a "voice," and how we are trying to help her use it. I am  passionate about explaining to others, in writing and in person, how Lilli has an opinion and wants to be heard even though she is not verbal. I want teachers and therapists everywhere to look at non verbal children in this way. Lilli definitely has a strong "voice."

I honestly have not given much thought to my own voice.

I guess I felt a little like I was yelling down a dark tunnel, thinking it was empty. Or maybe just full of spam. (Other bloggers will get that.) But I continue to yell because I need to get it all out. I did not know just how many people were listening on the other end. Maybe I will never know about all of them. But it does not matter. There are people listening.

It was so good to be reminded. I had a very humbling, precious moment where I felt a little like George Bailey in "It's a Wonderful Life," wasn't Christmas, and it had nothing to do with money, and I wasn't really questioning my existence...okay I guess it's not the greatest illustration. I thought of the movie because I think the best part is at the end, when George realizes that he has touched many other people's lives and never even knew it.  There is just nothing to say in a moment like that. You just take it all in and wonder at it all, how God brings people together through hundreds of seemingly random, different circumstances. But nothing is random. And I do not believe in coincidences. If only we all took more time each day to tell other people how they have made a difference in our lives. Even if it is small. How encouraged we would all be.

I have been writing this blog for a few years now, and I feel very blessed to hear from people I had no idea were reading this. I loved every comment on this blog and on Facebook. I received two phone calls from long-distance friends I had not spoken to in years. They called to tell me that they have been reading all along. I just did not know, that's all. I was very surprised, and more encouraged than I have felt in a long time. So thank you, to everyone who took the time to comment or call. It was a gift to me.

I have been thinking about my voice in our community and specifically in our church. Most times, I feel very small and insignificant, and mostly just plain old tired. I often wish that other people would advocate for families with children who have special needs. Meaning, people who don't have children with special needs, people who get a full night's sleep and lead more of a "normal" life. (There's my least favorite word again.) But it seems to be true that when a person feels passionate about something, that person is the one who can make the most difference. Our pastor says that when God puts something on your heart, He means for YOU to go and do it - not to go and tell someone else that "they ought to do something about it." Don't call the church and say that "they ought to take care of that situation." If it is on your heart, it is there for a reason, because you are that person who is supposed to do something about it.

See, I just sighed out loud to myself in this early morning dark kitchen.

Because I know that I have to go and do something. I have to go and do something that will be hard, but I can't not do it. I'll bet you squirmed a little or maybe sighed to yourself too when you read that. If you did, it's because you probably have something that bothers you too, and you wish somebody would just DO something about it. But you know that person is probably going to end up being you. Sorry to tell you that.

I will write about what I have to do another day. Today I want to end with this video clip of Lilli, who is learning to use her "out loud" voice. I believe that after you watch it, you will feel blessed in some way. This girl wants so desperately to speak, and it is incredibly difficult for her. Would you please watch this video, and say a prayer for Lilli, as she is trying so hard to practice and make these sounds and words come out? Here is the Youtube link in case it does not show up on your browser:

Thank you for reading. I will keep writing. I will keep telling my stories. I will tell stories about others as well. I hope it continues to encourage, enlighten, and bless everyone.

Morgan is trying to get Lilli to make the sounds "guh" for the letter G, say the word "me" and the sound "ticka ticka" for the word "tickle." Lilli says these sounds on her own so this is why we chose them, but she has trouble making the sounds come out "on command." This is due to speech apraxia. She is physically able to do it but has to work hard and really concentrate to do when when Morgan asks her. She is also a little distracted by me and camera shy. (Josh is climbing up the climbing wall making noise next to me while I'm trying to record.) She makes all the sounds Morgan asks, but softly, so you might need to turn up your volume. 

Wednesday, February 13, 2013

Telling Someone Else's Story...and Why I Must Tell It

I sat and listened to a woman I'd never met before, as she told me about her two young children. They are undiagnosed, ages two and three. She is on a year-long waiting list to get them in to a developmental pediatrician so they can get a diagnosis. A year! She cannot get more intense or specific services for her children until she gets that official diagnosis. They have early intervention services, with speech, occupational, and physical therapies. But she waits on a long list to get more help. If they do get a diagnosis of autism eventually, they will be put on another waiting list, which is two years long, to get behavioral therapy - ABA therapy for her children.

Despite the OT, PT, and speech therapies (which are one hour each per week) she struggles alone.  She has thousands of unanswered questions. She asks me, "What are the symptoms of autism? How do I know if my children have autism?" She does not even know where to begin. She has no idea what to do about the future. She lives a difficult life, waiting for answers. When you don't have a diagnosis, you don't have direction. When you finally hear the doctor say, your child has "this," at least you know what to focus on as far as therapies and programs. Well, to some extent, anyway.

In the meantime, while she is waiting, this mom's life is on hold. She cannot take them to the grocery store. She cannot take them to restaurants. She cannot get a babysitter. They have stopped attending church because of her children. She cannot take her eyes off of them for one second. She has a job, but she says her kids are in danger of being "kicked out of daycare" because of their behavior. One child is nonverbal and eats all kinds of objects, such as metal screws, crayons, and recently her own feces. The other child is extremely aggressive, has anxiety and volcanic melt-downs in any public place where there are crowds or groups of people, and bites others. The mother struggles to figure out what the non-verbal child wants - as simple as what she wants to drink. The little girl cries and cannot communicate her basic needs. They have feeding issues such as choking often on certain textures. They do not sleep through the night, ever. And...her pediatrician tells her nothing is wrong. Want to know the craziest part? We go to the same pediatrician. Yep. I shook my head and told her that she can't completely depend on the pediatrician for help with this, unfortunately. The pediatrician can make referrals, but the mother will have to ask for them. This mother will have to learn how to advocate and find help for her children by herself.

Can you imagine her life for one moment? Can you imagine trying to keep a marriage from falling apart and a career afloat while dealing with these issues every second? I hear stories like this and I think, why is this mother being made to wait like this? Why is there such a problem with getting in to see a developmental pediatrician? Why is she not getting more intensive therapies? Why on earth is the speech therapist not helping to establish a simple communication system for this frustrated little girl?

I think, What can I do? How can I help this woman? I hadn't even known her for ten minutes and I wanted to help her. You probably feel sympathetic and helpless just reading about her, and you have no idea who she is. I gave her some advice about advocating for her children and researching certain therapies. I showed her some of Lilli's old PECS pictures and explained how she could make some simple pictures to help her little girl tell her what she wants to eat or drink. I recommended the best book I've ever read about helping with her children's issues. I told her about how our church has a class for children with special needs with wonderful volunteers, and she could feel comfortable bringing them there. I will be in touch with this mom and try to think of ways to help her. But I can't do anything about the programs that don't exist, and the therapists that are not helping to establish a communication system, and the therapies that have two-year waiting lists, and the lack of doctors who can see her child and give a diagnosis in less than a year's time.

The whole time we were talking, she kept saying, "Oh, you just don't even know..." as she wiped tears away. But...I do know. Some of it. I don't know what it's like to be her and live her life, but I have shared some of the same experiences, frustration, and feelings of helplessness. She is probably so used to meeting other parents with "typically developing" children (sometimes I do get a little tired of that term because it reminds me that we are NOT typical) and she feels like she lives on a completely different planet when she hears them talk about their struggles. Hearing a mom complain about playdough stuck in the carpet and fighting with a sibling....compared to a mom in agony over her child that's non verbal and eats her own poop?  I personally think there is a difference there, but that's just me. Moms like to connect with other moms about their child-raising experiences and struggles. But when you don't know any other moms who have a non-verbal kid that eats feces, well, that can make you feel pretty alone in the world.

I wrestle with this blog, more than you can imagine. I consider taking my blog down every week. Sometimes daily. I question why I even do this. Am I wasting my time? I could be doing my dirty dishes right now, or a hundred other things. I wonder if people think I am egotistical, writing about my kids and thinking that others care. I do know some that some are irritated or just plain don't care. There are many people that are very close to us that do not read this blog. For the ones that do, thank you. I believe it helps you understand Lilli much better, and I can tell a difference in how people treat her or talk to her. For that alone, it is worth the uncomfortable feeling of baring my soul to the world. For the most part, unless people comment, I do not know what people think about the point of this blog. I write, I delete. I post, and consider deleting other posts I've already put up. It is an internal battle. I feel guilty for writing publicly about my children and my situation, because I know that writing something online is permanent. I cannot take it back. I don't want to embarrass my children or anyone else. I don't want to seem like I'm lecturing the world. I wonder sometimes, what is the purpose of my writing?

Really, it comes down to this: I write because there is no other way for people to know what goes on behind closed doors with a child who has special needs. If you don't know any personally, you might see them in public, rarely. You might feel sorry for them for a brief second. You might look away so they don't see you staring. But they have a story. And I believe those stories need to be told. It is my way of advocating for my own child, and for families like ours.

Why? Because they need help. Because they don't want to be judged. Because they never asked to live this kind of life, and they are trying to figure it all out. Because the next time you see a mother struggling with two young screaming children in the grocery store, it might be this woman.  The woman who is drowning in chaos and desperately needing help with her undiagnosed children, and she just needs to get a gallon of milk and some eggs without causing a huge commotion, but she can't. And lack of discipline or what you perceive to be "bad parenting" has nothing to do with her situation.

Because you might notice that a certain family that you know does not go to church, or to functions like the PTA school carnival, or to the movies, or to birthday parties, or to the neighborhood block party. But it might be for reasons you cannot imagine.

Because you might read this, wherever you live, and it might inspire you to think of a way that you could reach out to a family like this and help them.

Because the next time you go to the movies, shop at the mall, attend church or some other community gathering/event, I want you to look around and ask yourself, "Where are all the kids with special needs?"

If you don't see any, it's not because they don't exist. Trust me. If you don't see any, it's because the place or function you are attending has no accommodations for children with special needs. The same goes for adults with special needs. This is on a large scale for big things, and on a small scale too. The next time you are in a grocery store, look around for all the moms pushing their kids with special needs in special needs grocery carts. Don't see any? It's not because they don't need groceries. (Here is a link to a video about a special needs grocery shopping cart that I wish our grocery store had when Lilli was younger and could not walk as well. Wow, would that have changed my life back then:

Think about your workplace. Would a parent be able to wheel their child in a wheelchair into your store? Yes, I know there are laws about handicapped accessibility. That doesn't mean that every place is handicap accessible, not by a long shot. Once many years ago in the state where Lilli was born, I pointed this out to the pediatrician's office staff. I could not get Lilli into the building without a struggle. They had two sets of double glass doors, I'm not sure of the correct term - with one of those little vestibules to keep the cold air out. No handicap automatic button. Pushing a stroller with a baby (Chloe) and carrying a handicapped toddler (Lilli), it was incredibly difficult to pull open those two sets of doors to get into a doctor's office.  I suggested an automatic handicapped button. They thought it was a good idea; it had not occurred to them. A person with a wheelchair, a walker, or a child or two with special needs would have a terrible time opening those doors to get in. I wonder if they ever did anything about that.

Ever go to the movies with your child and think, where are all the kids with autism? They can't go to the movies unless your local movie theater has a special showing for kids with autism (and there are theaters that do this!)

Look around at church. Is there a way for parents who have children with special needs to attend your church? If you did not know I was coming, and I came to visit your church, would I be able to bring Lilli? We had a very hard time visiting churches when we first moved here, because most do not have a place for a child like Lilli. It was a lonely, frustrating experience until we found our current church home. Again I feel like I am getting into other topics that I could write entire separate posts about. So I will stop here, and leave you with this.

I write, because it is one small thing I feel that I can do to raise awareness and advocate for my child, and others like her. If my stories help you to have understanding for families who have children with special needs, I am glad.

I really hope it does make a difference. Please tell me if it does. It might keep me from deleting my next post.

Friday, February 8, 2013

Birthday Expectations...and a Smile

Lilli's Muppet cake. I decided Kermit would be easier to draw with icing, even though Beaker is awesome. 

Lilli's birthday went almost exactly as I predicted in my last post.

I asked my husband to read my post when he woke up that morning on Lilli's birthday. After he read it, he said, "That's a good reminder, we need to keep that in mind today in case any of those things happen."

That night after everyone left, he said, "Well, you predicted it!"  But somehow those parts of the day did not send us spinning into depression, because we had mentally prepared ourselves for the possibilities. That helps. If we don't mentally prepare ourselves, sometimes we get down because we have expectations for how we think things should go. I think this is a skill that parents of children with special needs, especially those with behavior and sensory issues, should practice. It's not being negative, just realistic.

We took Lilli to a bouncy house place with her cousins after lunch. That was the highlight of her birthday. It baffles me how a child that gets overwhelmed opening gifts in her own living room could love a loud, crazy-with-kids-running-around-jumping-and-screaming-with-laughter-kind-of-place like a bouncy house place. I don't really get it. But the good thing was, she said she wanted to go there for her birthday, and she had a blast.

Later when we opened gifts at home, Lilli started to cry. I just don't even know why. We were helping her pull all of these beautiful, sparkly shirts and skirts out of gift bags while she sat in her daddy's lap on the living room floor, and she looked so unhappy. I will not post those sad gift-opening pictures. She looked like she just wanted to get up and leave. She started to cry and it was heartbreaking and puzzling. We stopped opening gifts and let her go play in her room. My brother in law said, "It's OK, really, we don't have to make her open her presents now." I was grateful that he was understanding, even though none of us really did understand. When I put her birthday pictures in her scrapbook, I will have to leave the gift-opening ones out.

A birthday smile through the netting at the bouncy house place. 

So Lilli had a slow, birthday-present-opening "week." We helped her open a present here or there over the next few days. She did not really open them herself. Gift-opening is a challenging fine-motor skill and sensory experience for kids like Lilli. For many of them, she did not even look when we pulled the present out of the gift bag. She did not act the least bit interested in most. She did not want her cake. But that's OK. I really think she enjoyed most of her special day and likes her presents. She loves the musical Elmo toy we got her, she loved the bouncy house place, and she loves wearing all of her new sparkly birthday clothes and hair accessories. We decorated her room with her new things, and put her new jewelry into her new jewelry box. I know that Lilli enjoys things in a different way than most kids do.

Lilli's birthday did not go the way Chloe's went, or really, any other kid's birthday party that I've ever been to. Usually a birthday child wants all the attention, gifts, and cake they can get. But we knew it would be different with Lilli. It was good that we were realistic and had that mindset in the beginning of the day, so that we would not be upset later. If we set unrealistic expectations for ourselves and for our children, we will end up being disappointed. Even on a birthday. It is a dangerous place to go, comparing our children with other children. When we look at our children that have special needs and think about all the things they cannot do, we feel hopeless. We must focus on small things. Little accomplishments. Happy moments. Slow progress is still progress.

And a smile on a birthday, is a smile on a birthday.