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.

Leaving Lilli

If you know a parent of a child with special needs, especially new parents with a baby with special needs, do whatever you can to GET THOSE PARENTS OUT OF THE HOUSE on a date! I am sincerely appealing to all readers who do not have a child with special needs of their own, but know someone who does. If you have ever had the thought, "Wow, they have it tough, wish I could do something for them." This blog is for you.

Going back in time to when Lilli was a baby, people always asked what they could do to help us. We would ask for prayer, but that was about it. Pride is a powerful thing, and so is chronically sleep-deprived paranoia. Here would have been my list of needs if I had the guts/maturity/honesty/clarity to verbalize it back then:

1. Prayer (always the most important, it really is better than anything)
   
2. Money to pay bills – as in, mega hospital bills, endless co-pays to specialists, extra "special needs" costs on top of the cost to have a baby
   
3. Someone to bring random dinners over for us
   
4. Gift cards, because they are designated for places. Giving a person cash and saying "Use it to do something for yourself" means they will use it to pay medical bills.
   
5. Someone to watch my child for free so we could go on a date.
   
6. Oh, and a gift card to the restaurant FOR the date. I'm serious.
   

I must say that God indeed blessed us with friends and family who did all of these things for us. Even strangers, who sent us cards telling us they were praying for us and cash to use for "whatever we needed." I still have those cards. When I look back on those first few years, I can't believe we even made it through. Now that we have two other children who do NOT have special needs, I can tell you from experience that having them was cake compared to Lilli. A joy. Unbelievable surprise at how much easier it was, to have a "typical" baby.

All of Lilli's life, Jasen and I struggled with how hard it was to leave her, even just for a few hours to go on a date. How can I explain? She had seizures, choked on everything she ate and drank for years, needed medicine, slept in our bed because of her seizures. She has gone through terrible phases. Tripping and falling every few minutes. Eating rocks and mulch. Licking and biting everything, and I mean everything in sight. We still feed her. I won't even go into potty details. And she has absolutely no sense of danger.

So how do you hire a babysitter in this situation? We had to depend on family and friends who offered.

When we moved here to South Carolina 2 years ago, we started going to NewSpring church in Greenville, because they offer childcare for kids with special needs. Yes. That was the reason we went. Another blog someday will be about our experience with church with a kid with special needs.

One of the volunteers in the special needs class came up to Jasen one day and said that God had put it on her heart to offer to watch Lilli - and our other kids – so we could go out on a date. Jasen kept it a surprise from me. She showed up with her husband and a friend, and the three of them watched the kids for just a couple hours on a Saturday afternoon so we could go out to lunch. That meant the world to us.

This past spring, our lives were completely changed in several ways. One, we finally got a pulse oximeter to hook Lilli up to when she sleeps so we can monitor her for seizures. (Up til now we have had to watch her 24/7, and she sleeps with us.) Two, we qualified for home health nursing care for Lilli, 15 hours a week. Think of all the families who have kids like Lilli who do not have this help. As a result of these hours of having a professional nurse care for Lilli in our home, I can go grocery shopping, run errands, drive Chloe to school without having to take Lilli with me, and my husband and I can go on a DATE. We can actually go out and not worry about her, because if she had a seizure the nurse would know exactly what to do. Of course, we still have to hire a babysitter to watch the other two kids. AND we have to pay them. So when we go out, we have two babysitters at the house. But that's amazingly awesome for us. I do not know what the "statistics say" specifically about marriages that fail because of the strain of having a child with special needs. I have heard 75%, even 80%. Honestly, I don't want to know. It's depressing. But I can tell you from personal experience that I can understand why. It is the reason I am writing about this. So, think of a couple who has a baby with special needs, and help them get out of the house for a date. You won't believe how much you are helping their marriage.

The Beginning of Swimming

When you have a baby, you celebrate every milestone. It is a thrill to see your kid learn to do something. I often cheer loudly and clap for small and even silly things for all our kids, such as cleaning up the living room or eating every piece of broccoli. Sometimes it's just to make them smile, or to distract them from a possible tantrum. They think I'm goofy and it works for us. This past week Jasen and I were thrilled to clap and yell for Lilli at the neighborhood pool. Lilli has learned to float in a swim ring, but this week she started to slowly kick her legs to purposely move herself through the water. Keep in mind she is seven, and up until this week, her legs dangled motionless in the pool. Just like when we taught Lilli to crawl by moving her arms and legs for her at 15 months old, we had been moving her legs in the water and saying, "Kick!" I do not know how long we had been doing this. Things stretch on with Lilli for months, years. But the light bulb finally went on this week, and she can get herself over to the wall by kicking her legs.

This is a really big deal to us. Is she swimming? No. But I can't describe how huge it is for me to see her kick her legs and propel herself over to the wall with smiles and determination. It is the beginning of something new. It is a different kind of milestone. It is a milestone I did not even know was a possibility. Last summer, we were holding Lilli in the pool and teaching her to use the swim ring. A few years back before that, she was crying in her life jacket in a therapy pool in Virginia. How did I know she would get to this point? I didn't.

This made me realize the difference between how I celebrate each of my kids and their accomplishments. Four year old Chloe has learned to swim with a life jacket, and she is all over the pool now. We clapped and cheered for Chloe. I am super proud of her. Right now we are working on bike riding and losing the training wheels. But it's different with Chloe and Josh. I just, well, I expect them to learn these things. I assume that even if it takes them a long time, they WILL learn how. That's just all a part of growing up for them.

But with Lilli I think, she MIGHT learn how. Maybe. If we work on it for a really, really long time, she just might learn how.

I guess it is partly that I don't want to set myself up for disappointment, and partly that I don't want to put pressure on Lilli to learn something she is just not capable of doing. But how do I know where to set that limit? I don't. No one does. When the doctors told us she would never walk as she lay there in the NICU, just a few days old with brain damage, how did they know? If we had listened to them, we would never have tried so hard to teach her how to walk. When Lilli was two years old and crawling everywhere, I could not see into the future and know that all of our efforts would pay off just one year later. She took her first wobbly steps across the room at age three. When Lilli had a bad seizure and could not eat solid food, I had no idea that I would be pureeing her food for 3 long years in a Magic Bullet. But now she is eating chicken and green beans like the rest of us. She is even swiping chicken nuggets from Josh's high chair tray. When Lilli learns to do something new, it is a completely different kind of celebration. It is a gift. It is a miracle. And it is a reminder to everyone that we should never set limits on what our kids can do. Or more accurately, on what God can do.

I have had many experiences with people looking at me as if I am just this sorry, in-denial mother who does not realize her poor kid has brain damage. I noticed it recently when I made a comment about Lilli and someone bit their tongue and looked away with a kind of "that woman is on another planet" expression. I have seen that expression dozens of times. Even from Lilli's own teachers and therapists. I don't care. I would rather live for the possibility of miracles than settle for realistic limitations. Ask me if I think Lilli will talk someday. What do you think I will say?

Autism and the Unattended Wedding Ceremony

My nephew got married last weekend to a wonderful, sweet girl. I am so glad we were able to travel to be with our family and celebrate this event.

I just wish we could have attended the wedding together as a family.

I spent weeks preparing for this trip. I made 5 lists. Shopped for food, the wedding present, outfits and shoes for the kids and myself. Cooked meatloaf, a chicken, and a bunch of veggies and froze small portions in baggies. Lilli is on the Specific Carbohydrate Diet, so I had to take everything for her to eat, including snacks. I took Lilli's ipad, her dvd player and all her favorite movies, a few favorite toys, and more than enough outfits.

Looking back, I did an excellent job preparing for the trip in every way except one. I did not prepare Lilli mentally. One major oversight that might have prevented her major meltdown. Perhaps if I had talked to her about it, somehow prepared her mentally in some way, it could have helped her understand what was happening and calmed her a little. I will never know.

Chloe is 4 and she asks a million questions. Thank goodness, because hopefully in all that constant dialogue, she asks a few questions that Lilli is wondering about herself but cannot verbalize. I think this in the car often as Chloe chatters away, that Lilli is listening to her. (Or maybe she is trying to block her out!) Chloe asked so many questions during the ceremony that it made me realize how very new this whole experience was to all of my kids. We have never been to a wedding together. There I sat in the back row with Chloe and Josh, and Chloe asked one after another. "Why do they have rings? Why did they say 'I do?' What are they going to DO?" It makes me wonder what Lilli wanted to know.

Prior to the ceremony, we ran around the hotel room and got everyone dressed in a frenzy. I quickly put Lilli in a beautiful pink and white dress with a dark pink satin sash, and pink shoes with frilly socks. We decided to push her in her chair which is like a stroller/portable wheelchair for kids with special needs. Sometimes it helps take away stress from walking long distances and navigating unfamiliar ground which makes Lilli nervous, and tires her out quickly. By the time we all walked from the hotel room to the other side of the building outside to the patio, she was upset. The patio was where they had set up for the ceremony, and conveniently happened to have a fountain. Lilli loves fountains. My husband parked her in front of it, and that's when she started to lose it. We don't know why. The heat? Bugs? Too many people? Certainly not the soft music playing in the background. I checked to see if the dress was itchy. It was lined with satin and the tag seemed ok.

The violins had only been playing for a short while, and people were filling up the seats when Jasen said, "I'm taking her out." So he missed the whole ceremony. The last I heard of them was her wailing as he pushed her around the corner to go back inside. As the wedding party walked down the aisle I was torn inside with mixed emotions of joy for the happy couple, and frustration that my husband was missing it because of Lilli's disruptive sobbing.

After the ceremony we tried to take turns. He brought her back to the cocktail hour and she wailed again. We took her back to the room and let her watch a Veggie Tales movie. She was happy. Then we tried to bring her back to the reception. I tried walking her. Maybe the stroller was making her mad. She collapsed in a heap at the door to the ballroom, with her hands over her ears. The music was too loud for her. We quickly took her outside to where the photographer wanted to take a huge family picture. Jasen held her in the back and she sobbed as he lined everyone up. As soon as the picture was over he whisked her back to the hotel room, where she again was happy.

I know the event is now in the past, but I wondered what other parents have done for this situation. I Googled to see if I could find ideas for other parents who want to take their child with autism to a wedding or other huge family gathering. It took me awhile but I stumbled upon a term I had not heard of, which I hope will help Lilli a great deal.

What I SHOULD have done, had I known, was Google "social stories." Here is one mom who wrote a social story to prepare her daughters for a wedding: http://leechbabe.posterous.com/wedding-social-story

Other social story websites I checked out:

http://kidscandream.webs.com/page13.htm - designed by a young girl who has two brothers with autism. There are quite a few great social stories on there. Some of the links did not work, which was disappointing, but I liked the ones I checked out. My favorite was "Can I Sniff Your Hair?" which is so appropriate for many kiddos with autism, my goodness.

http://www.thewatsoninstitute.org/teacher-resources2.jsp?pageId=2161392240601226415747290 Has stories you can print out on topics such as emotions, school, and behavior

There are many more. If a parent is interested in finding one I suggest you Google "social story ______________" and fill in the blank with the subject you need a story about. There is even a social story book you can buy, but I have not checked it out yet.

I wish I had known. But now I do, and I'm off to tear through stacks of paper and ink cartridges, making social story books for Lilli. I'll let you know how it goes.

 

By the way, Josh and Chloe had a blast at the reception. Thank you to my family members, who helped us out in so many ways.