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.


  1. Hi Jennie. I admit to not reading them all, but every post I've read on here has been extremely well-written and informative. For all the reasons you've listed I encourage you to continue writing. I do think it's important, and you're in a good position to provide a window into a special needs world where many of us have no insight.

    I know what it's like to get almost no comments on a blog, and that it's a bit disheartening, especially when it's a topic that means something to you. It's got to be even harder when you believe some people are annoyed about it. Just know that people are reading and you are making a difference, and that's more important than any who may be annoyed. For example, you've helped me understand a little better why we need (and have started) a special needs program at our church. I have a lot of respect for you and the other parents who deal with issues like this daily.

  2. Jennie. I love you and your family. I love that you are so passionate about advocating for Lilli. I wish all parents (of children with or without special needs) were like this. You bring joy to my heart each time I read one of your posts. I was sad when you moved away from VA but these posts keep us all connected to you and the family. We all miss you so much at First Christian and are so excited that you are doing so well where you are now. Please send everyone my love and know that you are always in my thoughts and prayers and praises. God has blessed you in so many ways that most people would not recognize or understand but you know his power and love. Thank you for the encouragement you give to others. Miss you and love you more.


  3. This is actually the first time I came across your blog and I love what you're doing. Other people ARE unaware of special needs and many times they aren't sure how to act around one. The more knowledgable people are, the more they can empathize and the more advocates we can get for special needs children. Writing is tough and you don't always get feedback, but trust me, you are touching someone's life so keep it up. I have my own battles - one child with special needs, one developing "typically." They are both such a blessing to me, but it's a constant struggle. Connecting with like-minded people is always a help. Sharon

  4. Aunt Jennie I read every single one of your posts and I am almost always brought to tears because of how beautifully you write and how passionate you are about your family and sharing your experiences with others. I am amazed by your strength and although I can't possibly imagine feeling what you go through on a daily basis, I am able to translate it and have it apply into my everyday experiences. I need to hear your stories as well because unfortunately my family doesn't get to see your family very often, and your blog keeps us connected. You are an inspiration first for being able to deal with the challenges you have, and second for being courageous enough to share them with anyone willing to listen. I am willing to listen for as long as you are willing to share. Your faith in God throughout everything has helped to strengthen my own faith and remind me to count my blessings. I count you, Jasen, Lilli, Chloe, and Josh as some of the many wonderful blessings in my life! Love you guys!

  5. This is all so true. You are doing important work every day. Love you my friend.

  6. Hi Jennie, Many years ago there was a traveling preacher that got sent to prison. In the back of his mind I’m sure he always questioned why God would send him to prison, after all he had such an effective ministry as an evangelist. This was before the time of texting, blogging, or emails, but while he was serving his sentence he began to write and counsel with churches about what struggles they were having. So popular where his letters they got passed from church to church. When I say many years ago really I mean about 2000 years ago. The traveling preacher that suffered imprisonment was none other than the apostle Paul. And the letters, well the ones we still have make up thirteen books of the Bible. (Romans through Philemon) Most people don’t realize Paul struggled greatly with the role God had asked him to take. After all we know him as the man that said “for me to live is Christ but to die is gain”. He talked much of joy in his trials and contentment in difficult circumstances. But look at 2 Timothy 4:9-18. Paul feels abandoned, and frustrated. He even wishes ill on others. The point is I’m quite sure at times Paul felt like balling up the parchment and throwing it away and pouring the ink down the drain. He missed the freedom he had and probably often wondered WHY ME? Of course we know why. If God had never sat Paul in timeout he would have never taken the time to write those letters. The early church would have struggled from the lack of his stationary advice, and the modern day church would be missing his wisdom completely. In Revelation 3:12 God promises to make those that endure patiently a “Pillar in the Temple of God”; that sounds so cool. That is until you realize a pillar is a structural thing. Its entire purpose is to stand tall, straight and firm, holding up whatever the builder places on top of it. What an exhausting job. So the next time you’re ready to stop blogging or push that delete button just remind yourself these two things. First you never know whose life your writing will impact because you don’t know how long God intends to use it. Second while some pillars get to adorn the outside of buildings, most of them are trapped in walls never thought about and never seen, but look at the ceiling above you, aren’t you glad they are doing their job?

    Take care and keep the fingers to the keyboard


  7. Jennie -
    I came across your blog quite by accident...and I'm so glad I did. I'm a pastor's wife in a small rural church. We don't have a program for children with special needs but I know there is a great need for it. I've read your posts about the awkwardness with which you were received at some churches. My question is how do we avoid that awkwardness when we have parents bring their children who have special needs. I'm sure it sounds so uneducated for me to ask, but how should we treat you and your child? Obviously we want you to feel welcome, and we are good at welcoming most folks, but I'm not sure we really know how to make you and your family feel welcome. Do we get down on Lilli's eye level and speak to her? Do we try to coax her into coming with us (as strangers to her) into a classroom? Do we ask you for instructions on her care, both physically and developmentally? I'm sorry if I sound so uninformed, but I am. I think much of the time that is the problem. I just don't know how to handle the situation. It's like trying to figure out what to say when someone loses a loved one to death. What do you say? How do you make them feel comfortable and like they can trust you? I would love to have some simple insight from you in how to handle situations like this. After being in ministry for 35 years, I can pretty easily feel my way through most situations but I want to know how to do it in a way that truly allows you and your family to feel the love of Christ living through me and our church family. Maybe you would be willing to address this in a future post. I would love it and will be watching your blog closely.
    I pray God's richest blessings on your family and His protection on Lilli in particular. You are truly honoring Him in the care you provide for Lilli, and the way you so clearly express your life experience. I'm so thankful that I found your blog tonight.

    1. Dear Gigi, Thank you for your questions. I would be happy to write a future post on this subject. In the meantime, here is a post I wrote awhile back that might help (I'm sorry I don't know how to link it here in comments)It is not specific to church, but it still is good for a parent's point of view on how people treat a child in general: Also, thank you for your kind words and your prayers. I am humbled that God is giving me this blessing of writing our story, and that others want to hear it.