Friday, May 20, 2011
Years ago, I first heard about "Theraputic Horseback Riding." It is also called "Hippotherapy." Whaaat? What kind of therapy is THAT? I'll keep my kid away from any kind of therapy that involves hippos, thank you. Kidding. I did not think that it directly involved hippos, but I knew nothing about it. The "hippo" part comes from the Greek word for horse. Lilli was a toddler when I read about it on the internet. My first thoughts were:
She's too little.
Must be expensive.
Don't have time to research another therapy for my child.
I was wrong about all three.
Children with special needs can begin hippotherapy at a very young age. Some sources say 2, some say younger depending on their physical abilities. The child sits on a small, well trained horse with a person on either side, holding onto them. It's not like your child has to be able to ride a horse on their own. It's easier than putting a child on a bike. I would describe it to be as safe as putting my child on a merry go round horse, with me on one side and my husband on the other, holding onto her the entire time. Nothing scary about that. Even better, I don't do the actual holding of my child. A trusted pair of experienced therapists hold my child and walk with her, while I get to take pictures and yell, "Good job, Lilli!!" from bleachers filled with parents.
Sometimes insurance actually covers hippotherapy. This is something a parent needs to ask a doctor or physical therapist about, and check with the insurance company and the hippotherapy provider. In our case, it is a wonderful, non profit organization with trained volunteers. We pay $5 every Saturday for a 20 minute session. Before we found HALTER (http://www.handicappedathletes.com/ ) I looked into another local farm that offers hippotherapy. They ask for $30 per session, once a week.
Minimal. My niece mentioned it because she was interested in becoming a hippotherapy volunteer. I called two places that I Googled and had Lilli put on a waiting list for HALTER, a local program here in Spartanburg. We had to wait a few months. When she reached the top of the list I had to get our doctor to fill out and sign a medical form, and that was it. We showed up with the checkbook, my camera, and made sure Lilli was wearing long pants and sneakers. Easy.
I wish I had not waited so long. Lilli has had 5 sessions so far. The first week, she would not wear the helmet, and was afraid of the horse. Mike, one of the volunteers wearing a cowboy hat, spoke gently to Lilli. He scooped Lilli up and took her to meet the horse. He sang Twinkle Twinkle Little Star to Lilli and helped ease her onto the horse's back. She sat for a few moments, and that was it. They told me not to be discouraged, to come back and see what happened the following week.
Week 2: I spent a lot of time getting Lilli used to the helmet. Lilli sat on the horse and rode around the ring. She was leaning over, clinging to Mike the entire time, but she was ok with it. She was quiet, but interested.
Week 3: Lilli wore the helmet no problem, and sat up by herself while riding. She smiled and made happy sounds the entire ride.
Week 4: Lilli laughed and smiled the entire session. They turned her around backwards on the horse. That was to help work on her balance while riding. She was thrilled.
Week 5: Lilli was a pro, sitting up straight and riding forward and backwards with a huge smile the entire time. She squealed with happiness and kissed the volunteers and her own hands. Other parents said, "Isn't she the one who would not even get on the horse a few weeks ago?"
Tuesday, May 17, 2011
I picked up Lilli's new ipad from her school yesterday. My housework is going to seriously suffer even more for a few days while we play with it.
Last night I had a brainstorm, and this morning I tried it. I used an app called "Proloquo" that Lilli's teacher and principal had put on the ipad for her. It is a communication device that can "speak" for her, if I can get her to learn to use it. I pulled up the typing keyboard on the app, and held her hand. I made her type "go." On this app, when you hit "speak" it says the word for you. So I made her hit "speak." The voice said "go." Then I quickly put on a Sesame Street Youtube clip. At first she resisted. She does not like to have her hands touched. This I expected. I only did it a few times...and I saw the light bulb go on.
I wanted Lilli to see that if she types a word and hits "speak," she can tell me to make the movie go. Believe me, she gets it.
After working on it together for an hour and a half this morning, Lilli was already leading my hand to the "G" and the "O." That is the great thing about hand over hand. I lead her hand until she is confident. Then she begins to lead mine. And then one day, she does it by herself.
Together we typed "Mommy," "Lilli," "eat," and "movie." Lilli smiled and kissed her own hand. That is "Lilli language" for "this is cool, I love this!" She also kept trying to SAY the word "go," which came out kind of like a breathy "gee"
We are on a break. Josh is beginning to stir from his morning nap. Lilli just dug in the trash and came to me with coffee grounds all over her hands. The dishes are piled high and Lilli needs her medicine. Guess I'd better get out of ipad world and get back to life. But my joy from this morning will distract me from the chaos.
Thursday, May 12, 2011
On the Friday before Mother's Day, the kids and I sat in the van and I opened my mother's day gift from Chloe up in the parking lot. She begged me to, she could not wait until Sunday. I made a big deal and ooohed and ahhhhed over the simple bead bracelet and card she had made for me in preschool. And all of the sudden, Lilli started to cry. She put her hands over her ears and threw herself back in her seat and cried, out of the blue.
Because Lilli cannot talk, she cries for most of her needs. Having pictures to communicate has helped some, but there are only so many pictures Lilli will use. I immediately thought, she's hungry. But then realized, no, just fed her. Then: she's bored. No, she's tired. She wants a movie, or music. She's hot. Hmm. Maybe she is overstimulated and wants us to stop talking.
I always go through a mental list of her basic needs. And then it hit me. What if she is upset because I am making a big deal out of something Chloe made for me, and Lilli has nothing to give to me? Is it possible that she is aware enough that she is actually jealous and upset?
Lilli does not give the kind of feedback that a typical child does. Most of the time she seems to be focused on other things. Movies, music, the toy she is playing with, her shoes, her fingernails, etc. How do we ever know what she is thinking? We don't. I have no way of knowing. Honestly, much of the time, Lilli does not seem to be aware of what we are talking about or doing. She does not seem to care. But that is because of the way she acts. I have to constantly remind myself to give her the benefit of the doubt, and hope that she does in fact know what we are talking about. That she is paying close attention even though her head is turned away and she is deeply involved in one of her favorite activities We get hints that she does. I guess it has a lot to do with what is important to her. For example she will come running from the other side of the house if I say "Let's watch a movie and eat cheesepuffs!" If we go to the park and I say, "Lilli, want to swing?" she takes my arm and drags me right over to the swing. I know she understands a lot. I just don't know how much. So I have hope and I continue to try.
I explained to Jasen that Lilli might want to give me a present too, and that he would have to help her. Even if we did not know for sure that she cared or understood. It might be important to her, therefore we should do it for her.
Jasen stayed home with Lilli during church, because she has been having so many seizures. When I came home, there was a gift on the table for me. He took Lilli by the hand over to the gift, and guided her to "hand" it to me. She wriggled to get away. I held her in place while I opened it as fast as I could and made a big deal out of a bracelet with pink, blue, and green plastic beads. She looked the other way. Jasen later told me that he had bribed her with cheesepuffs to get her to "help" make the bracelet, which means Jasen made it while trying to have Lilli help him in some way. I slipped it on and tried to give her a hug. She wrestled away from me and grabbed my arm, pulling me to the snack cabinet. She wanted a cheesepuff.
I tried to show her the bracelet she had "given" to me. "Lilli, look! Lilli look what you gave Mommy! I love it!" She would not look at it. She pushed my arm away, and whined.
A few hours later she had a seizure. A few hours after that, the bracelet broke as I brushed my arm against the couch while holding Josh. I sadly picked up all the beads off the carpet and wondered if Lilli would want me to fix it or not, if she even cared in the least.
Sometimes I am numb to these tiny heartbreaking moments which happen daily. Did she "get" that it was Mother's Day? That it was a gift from her to me? Sometimes I shake my head and think, why. Why take all of that time if she doesn't care or understand at all?
Because she might. That's why. And because she's mine, and I love her. I think that might explain the essence of a mother's hope for a child who has autism. Hope for the impossible. For the unseen. For what might be, someday. How can I live any other way?
Wednesday, May 4, 2011
The quick update on Lilli is this: she has had a lot of seizures since February. In March I decided I could not send her to school anymore. I worried that she might have a seizure there. She is now receiving medical homebound instruction and has a sweet, wonderful teacher who comes to the house an hour a day to work with Lilli. Lilli is much calmer and happy to be learning at home.
First, we all started to work intensely with Lilli on Starfall.com, using the touchscreen that the school provided for her. We had been doing this hand over hand for about 3 years. (Hand over hand just means I take her hand in mine and I make her hand touch the screen in the correct places.) In just a few weeks' time, Lilli learned to do the program completely on her own. This is amazing to us. This happened just in the time between Lilli being home from school and before the school could find a homebound teacher for us. My mother in law helped me work with Lilli every day for the month of March. By the time the homebound teacher started in April, Lilli could do Starfall on her own.
Next, I asked the homebound teacher to help me work on typing with Lilli. We are now working on teaching Lilli to find the letters L and I on the keyboard to type her first name (hand over hand).
I am very inspired by several stories of non-verbal children learning to communicate through typing. Watch this video for one incredible story here : http://www.youtube.com/watch?v=F4XMlhCfp3Q I am so thankful that Carly's parents shared their story with the world. I hope Carly knows how many people's lives she has touched, including ours.
I watched that video clip and thought, "Lilli can learn to DO that!!!" I got excited and began to make plans for how to teach her to type. We are using a LeapFrog Click Start game to teach her. I did research and found that this has a keyboard much like an adapted keyboard. Adapted keyboards cost around $100 to $200 in special needs catalogs. The LeapFrog Click Start is about $35. I thought this might be a more affordable option, and it has turned out to be perfect for Lilli. My 4 year old Chloe loves it too! It teaches typing, using a mouse, letters, numbers, and colors. The best part is you can hook it up to your tv and your child will not mess up your computer.
I believe Lilli can learn to type. This was one area of frustration I had with the occupational therapist over the past 2 years. She did not believe in Lilli. She did not think Lilli could sit in front of a computer and focus on learning to type. Lilli knew she thought this. If any parent reading this has a child who has special needs, may I encourage you to never listen to any negative opinions that a therapist has about your child? Or any doctor's opinion, or anyone at all, for that matter! You child knows if someone believes in him or her. When you stop believing that your child has potential, your child will stop believing it too. And then there is no reason to try.
We had an IEP meeting yesterday for Lilli. It was the best meeting we have ever had. I cannot believe I can write those words. Before the meeting, I asked that NO therapists be invited. The wonderful teacher wrote all the goals with me. The fabulous principal and director of special education decided to get a brand new ipad for Lilli to use at home! They ordered it immediately and we will have it by next week. Now a whole new world is opening up for my daughter, thanks to family members and the school staff who DO believe in her. The road is long and progress is slow. When you think about it, 3 years is a long time to do hand over hand to teach a child to do something. But the results of all of that long, hard work are priceless. Lilli is learning to read by using starfall.com.
I just cannot wait until the day I can blog about her typing skills.