Five Minutes on Saturday

Sometimes, just one simple everyday moment in time can completely rock my world, and give me new perspective.

That happened to me last Saturday, simply because I met someone and spent five minutes with her. Five minutes that I will probably think about for the rest of my life.

The day before, on Friday, I had a moment with Lilli that I rarely get. Lilli still takes a nap every day. She gets tired out. She's almost ten, but something about her neurologically - maybe the seizures - maybe the brain damage - she still must take a fifteen to thirty minute nap every day. And almost every day, she naps in her special needs carseat while we are driving to pick up Chloe from school.

But Friday was different. Jasen had the day off, and he went to pick up Chloe. Josh had fallen asleep on the floor in front of a Batman cartoon. So I decided I would just try and lay down with Lilli to get her to take a short nap. We snuggled together, and she fell asleep.

Years of interrupted sleep since Lilli was born has wrecked my ability to nap. I have a lot of trouble sleeping. But I didn't mind the quiet time to lay next to her, thinking. It was so sweet, this moment with my daughter. I spend a lot of time helping, dressing, feeding, bathing, coordinating her school and therapy schedules and goals. Then there's Josh and Chloe, who need attention too. But I rarely get to have a quiet time with Lilli, where I lay down and take a nap with her in the middle of the afternoon. (Any mom will agree that it's a miracle to have all of your children nap at once.) I thought, wow, I wonder if I will still be taking naps with Lilli many years from now, when Josh and Chloe are older and are both at school all day.

Then I thought, I wonder how many other moms of nine year olds can do this? 

I hugged sweet Lilli, listened to her soft breathing, and I felt blessed.

The next day, Saturday, I met a girl. The girl I will be thinking about for a long time.

I had heard about her for several months, but I had never met her in person.

A friend stopped by to pick something up. She had this girl with her because she helps provide care for her on the weekends. I went out to the van, because I really wanted to meet this girl that I had heard so much about.

I went up to the window of the van, and introduced myself. I won't tell you her name. She is a twenty five year old girl who has autism. She is non verbal. She has no way to communicate. She cannot be left alone. She needs a lot of care.

She was silently sitting in the back seat of the van, looking down at her hands. I said hello to her though the window, and she looked up at me. Her clear blue, beautiful eyes looked directly into mine.

"I've heard a lot about you, lots of good things," I said. "It's so nice to finally meet you."

She was silent. I smiled at her. "How old are you?"

Some long-time readers will remember an old post of mine about talking to a person with disabilitites. (If you missed it you can read it here.) I knew that this girl could not speak. But she deserves to be spoken to. Everyone does. We talk to infants. We talk to cats and dogs. Some of us even talk to plants. I catch myself talking to toys on the floor, although it's not always nice words. If we talk to animals and objects, how can we ever ignore a person with a disability? It's a person. I know it's hard to know what to do when you see people in wheelchairs, people with missing limbs or people with mental challenges. This is what you do: smile, look them in the eyes, and say hello. That's all.

She reached out through the window and touched me.

I waited a few beats, and then asked my friend how old she is.

Twenty five.

This is what hit my heart: She's an older version of my Lilli. Sixteen years from now. Maybe.

Maybe Lilli will speak words one day. You know that is my biggest prayer for her. But maybe she won't, and that's okay.

I felt the urge to hang out with this girl. I wanted to paint her nails and read her a cool book. I looked at her and saw what looks very much like my future daughter.

And I felt overwhelmingly blessed.

The next morning, we went to church, and part of the message was about joy. That as we take communion, part of it is to remember that God wants to give us true joy in our lives. As we took communion together, tears ran down my face as I thought about how my life has not turned out at all the way I expected. We've missed a lot. My high school reunion is coming up. I cannot even consider it. I have missed weddings of dear friends. I have missed holding their new babies. We have missed trips and vacations. We might always struggle to find people to watch Lilli so we can simply go on a date. We might always struggle financially to live on one income so I can stay home with Lilli and provide for her needs.

But I am seeing that God's plans for my life were greater than any idea I ever imagined. And the blessings far outweigh the things we have missed.

When I was twenty-four with a fresh new teaching career, I never dreamed I would one day resign, because I have a child with special needs who I will likely be caring for full-time for the rest of my life. Some might see it as a burden. I cannot explain it well enough in words. And even when I say this, some will not understand or see it.

But it is not a burden.

It is an incredible blessing, and a privilige. A gift from God. A glimpse of Him. A tiny piece of an idea of heaven.

Even if that does not make any sense to you, I had to try and put it into words somehow.

It's true, I do have some very difficult, discouraging moments. It's hard. Very hard.

But it's a blessing. It is a joy. True joy is not always for happy times. Sometimes joy is most precious in the hardest times. When a person can go through a dark time and still know that God is with them, that God has plans for them, that God knows the future and it is all going to work out for our good, that is real joy.

I'm blessed that God had better plans for me than I could ever imagine. And I'm blessed to have met a future version of Lilli, so that I could have a glimpse of my own heart. I realize that I am not dreading the future. I am not afraid. I am not depressed. I am blessed. I have a purpose.

I am Lilli's mom.

Lilli and me at the pumpkin patch this week. 

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: http://www.youtube.com/watch?v=7HTt9fx5WPE

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.

Invisible, anti-social mom

One reason I decided to start a blog is because I hope to connect with other moms of kids who have special needs. My desire is to pass on hope to others who are struggling. Everyone needs encouragement. Sometimes it comes best from someone who's "been there." I'm only six and a half years into this journey; I need hope to cling to everyday or I would drown in defeat and depression.

When Lilli was an infant, strangers couldn't tell. People cooed and strangers made nice comments about her, the norm for a cute little tiny baby.
As she got older I took her to places where you take any toddler; the library, the children's museum, the park. I quickly learned that I was in a catagory by myself. I started to avoid conversations with other parents I met. I knew that if I seemed friendly and open to casual conversation, the questions about Lilli inevitably came.

The defining moment of the beginning of my anti-social decision came at the grocery store. Lilli was in her infant car seat in the grocery cart. She was about 9 months old and still learning to sit up. I was engrossed in the shelves of stage 1 baby food (Lilli had trouble eating and choked and gagged a lot due to having CP). Another mom pushed her baby up alongside me and struck up a conversation. "Aww! She's so cute! How old?" It turned out that her baby was the same age as Lilli. He was sitting up in the cart by himself, and she was buying stage 3 food and Gerber Wagonwheels for him. That instantly depressed me. "Isn't it a great age?" she gushed. "Is she totally crawling all over the place, getting into everything?" She laughed.

Hardly. Lilli would not crawl for 7 more months, at 16 months old.
And here it is: I lied to her. "Well, yeah," I said, and began to push off down the aisle. It was all I could do to keep from losing it right there, and I didn't cry until we got in the car. I never realized how much it would hurt when I saw other children Lilli's age.

Now you might have the urge to criticize me or think how awful I was to lie about my daughter, was I ashamed of her? No. I was not ashamed at all. The pain in my heart of my precious little baby having seizures and developmental delay was too great. I knew if I tried to explain why Lilli was not crawling yet, that I would start to cry right there in front of a complete stranger. And really, do people really want to know all of that stuff when they are just innocently making conversation? It was me. It was the state of my emotions and my heart, still taking it all in and trying to bear it. I backed away emotionally and decided I just wouldn't talk to other moms, that's all.
Anyone who knows me must think I'm making it up, because I am not a very reserved, quiet person. But having Lilli changed me in ways I didn't expect. I started to feel secretly relieved when we were the only ones at the playground. I avoided eye contact with other moms when we were out so I didn't have to talk to them and explain about my daughter. As she grew, I noticed more that instead of strangers smiling admiringly at my sweet tiny baby, they stared with curiousity at my crawling two year old. And then stared with disgust at my chewing-on-everything (including mulch, rocks and shoes) three year old. I've had strangers stare with horror at 4 year old Lilli licking various things like shopping carts and hand railings (she likes metal). She went through a major hand-licking phase around age 4, ugh that was awful. I didn't LET her lick all these things, but it was a round-the-clock battle with her.

But after 6 years, I've gotten better. It is much easier for me now to explain about Lilli to anyone who asks. I think it is part my acceptance of her diabilities, and part time healing my heart. I have a testimony, I have an experience that others can learn from. I believe Lilli is the way she is on purpose, for a reason bigger than I can grasp. Having two more babies after her has helped. I can talk to other moms anywhere I go and make conversation about all of my kids. When I look at Lilli now, I don't see a child that's not like other children. I see her. I see Lilli, exactly who she is meant to be.