Wednesday, May 4, 2011

Shooting for the Stars...I mean,

I don't write often enough. I know this is simply because I am constantly chasing after 14 month old Joshua, who just happened to break a lamp with one of those mercury-containing lightbulbs. After an hour of professional clean up just short of me wearing a Hazmat suit, he is back in bed for morning nap and I think the living room is safe again. The EPA website I Googled said to open up all the doors and windows to air out for several hours, and keep children and pets out of the room while cleaning up the bulb fragments with tape. The broken bulb is now secured in a glass applesauce jar in the garage and I am shivering in the kitchen. (I followed the directions to the letter. Paranoid!) Fortunately for us, it is not the dead of winter.

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, 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 : 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
I just cannot wait until the day I can blog about her typing skills.


  1. Jennie, I am so glad to see you blogging! Lilli looks and sounds like she is doing amazing. I am sorry for the negative attitude that people, in positions that should be encouraging, have given you! Especially when it involves encouraging children! I love the photos on facebook! And all that wild curly hair Chloe has! They have gotten so big!

  2. Thanks for posting this, Jennie. Even though we covered the basics during our visit, it is good to know that you have found support for your belief in Lilli. It's hard to be out there alone. You are such an amazing mommy!