Madison began a new special needs preschool program at the end of August. It’s a very long story, but the program had an extremely rough start, and it was a very hard time for our family. Madison wasn’t ever unhappy there, there were just a lot of problems with the teacher. (Safety issues and comments such as: "Madison can’t do that - she’s handicapped.") So after a lot of hard work from a strong group of parents, the teacher has been dismissed from the program, and the program has started flourishing. It is a brand new program and will continue to have some growing pains, but it is a stimulating, safe environment now with very caring teachers and aids. "Teacher Kris" came to the rescue when the original teacher left, and she is an amazing woman with a kind and compassionate heart. Madison loves her! Madison is absolutely thrilled to go to school every day, and we feel very comfortable with the situation. I am not sure that it is absolutely the best place for Madison - there are definitely still some major issues with the program, but we can continue addressing these issues as Madison is surrounded by all of these caring, lovely people. I would like to see her in an environment with "typically developing" children as well, but for right now, this is our only option. We’ve been trying hard to maintain consistency with her "typical" playgroup and she gets many opportunities to learn from her little friends.

I am quickly learning what the term "advocate" means, and I am finding some passion in being Madison’s. I am reluctantly learning the ropes of this crazy special education system, and it is one of the biggest challenges I have ever been presented with. I am learning to be much more assertive (but not demanding?) and fight for what this little girl needs. Our latest battle has been trying to get Madison the amount of speech therapy she so desperately needs. We knew things were bad, but after doing some calculations, we realized that as of January, Madison had only received 300 minutes of the 800 minutes of speech therapy she was supposed to have received. We have filed a formal "compliance complaint" with the district to get her the therapy she deserves. This system is really set up in a way where they truly make you fight for what your child needs. It’s very adversarial, and if the parents don’t stay on top of things, the children will not get what they need. The whole system is quite sad and depressing, but we have no choice but to learn how to work with it...

While we are waiting for the district to figure out how they are going to give Maddie the therapy she needs, we have started seeing a private speech therapist who is just wonderful. Her name is Adrianna, and she is actually the therapist who was in Maddie’s classroom for those 300 minutes I spoke of before. Madison works very well with her, and Adrianna gives us a lot of hope. Before this summer, one might have called Madison "nonverbal", but that slowly began to change. Now, she is very vocal (for Madison), and it is beautiful. She knows about 5 solid sounds, and she is beginning to label many things with their beginning sounds. For Madison, this is HUGE! Even with my overly optimistic attitude, I truly began losing hope that she would ever talk. But now, we are seeing a glimmer of a voice that is actually communicating with us. She uses the "d", "m", "b", "n", "a" sounds very regularly. She also recently added a "p" and an "h" to her repertoire of sounds. She is actually trying to say HI! Another HUGE development in Madison’s communication is that she finally has a sign for "yes". She can’t say yes, she can’t nod her head up and down (because it makes her feel like she is going to fall over), and the actual sign for yes is hard for her to do. So up until this point, if you asked her a question, she would just say no. She had a no that meant "yes" and a no that meant "no", but her answer was always no. Try explaining that to a baby-sitter! In San Jose, a clever conductor had the idea that Madison could put her arms up in the air when she meant "yes". Sure enough, it worked! Now if you ask Madison a question, she can give us a hearty YES with her arms. I can’t explain in words how much this has changed our life!!!

There is a ton of controversy on how Madison should be communicating right now, and that has brought us a lot of frustration. Some people say we should continue with communication boards, pictures, and sign language. Others say we need to just have her work on verbalizing and that all of those other things might hinder her motivation to actually speak. We are going with our gut here, and using a combination of all of these things that seem to be working for Madison and our family. Our biggest goal is for her to talk of course, so she does have to make sounds for things she wants. However, since she can’t make all of the sounds, we are still using some sign language to bridge that gap. She is using the communication boards and buttons only when she really needs a voice. For instance, if she is in the other room doing a sign that she needs to go to the bathroom, and we can’t see her, then we don’t know. So we have put talking buttons throughout the house that say "I have to go potty!" She has been using these with great success.

Maddie’s "cruising" has gotten much more solid, and she is really starting to get around. She can go from one side of the bathroom to the other holding on to the counters. She is getting into absolutely EVERYTHING now which is so fantastic, but I quickly learned that my Sharpie pens weren’t even safe in the top drawers! Maddie continues to have a love/hate relationship with her purple walker, and just doesn’t really like it! She never has - she never will... She’ll use it, but when she’s not really in the mood (which is quite often), she’ll just do spaghetti legs and drop to the ground. It is VERY frustrating because we know she CAN do it - she just doesn’t WANT to do it. We have just ordered a new walker that she has been using in therapy that she does a little better with. It has a nice place for her to put her arms, and it just seems to work with her body better. It is a very ugly blue color, so we are going to have to look into ways to sass it up a little!!!

Derek has been inspired by some of the equipment used in Conductive Education, and has put his engineering skills to work to create some new things for Madison... He built her parallel bars out of PVC pipe that are about 15 feet long. She can easily walk the length of the bars - with a big smile on her face! He also built wooden bars along several of our hallways at Madison’s height so she can "side-step" her way to several places throughout the house. All of these things are giving her more independence and more confidence in her walking skills, and I think she is very, very lucky to have such an amazing daddy who loves doing these things for her! He was going to attempt to build her a ladder-back chair that is used in CE, but the guy only has so much time on his hands! We found a man in Arizona who builds this equipment, and he just made a chair specially fitted for Madison’s body. We just received it, and Maddie is very proud of it! This chair has many different purposes, but the main purpose we will be using it for is so Madison can push it and walk around the house. Sort of like what a walker is used for, but different... Hard to explain. It will also give her a chance to pull herself up at different places in the house. For instance, on the potty, she can now stand up when she is done by holding on to the rungs on the back of the chair, then push the chair so she can "walk" to the sink.

The last major development in Maddie’s life is that she is being potty trained! This is going to be a very VERY long process, but I know she can do it. If it weren’t for the program in San Jose, we wouldn’t be anywhere near where we are now with this, and I don’t think we could have started this on our own. Since the first day she went to the program in San Jose, they had her wear regular panties - and they dealt with all of her messes! It was quite inspiring, and they made me realize it doesn’t have to be a huge deal if someone pees in their pants... What they discovered about Madison pretty quickly is that her bladder muscles work very much like the rest of her muscles in her body - kind of out of control and jerky. So Maddie doesn’t just do one big long pee - she’ll pee a tiny bit but then she’ll stop. She has no control over this. So basically she pees a little bit all of the time. GOOD LUCK WITH THAT! They said it IS possible for her to start understanding these muscles, though, and if she continuously feels her body doing this, she should learn to control it. So this means we just have tons of little panties and a big drawer of extra pants. If we are home all day doing this, we can easily go through 10-15 pairs of each... On the flip side, her poop muscles are fantastic! ;-) She has actually been quite successful with this part of potty training, and that has been a wonderful surprise. (Something that comes easy for Madison? We’re not very used to that!) It’s not perfect, but I would say she poops on the pot about 75% of the time - and I’m very pleased with those statistics! She does her sign for poop (by plugging her nose!) and we help her to the potty.

Still searching for a diagnosis...

Yes, Madison was diagnosed with Cerebral Palsy almost two years ago. In giving her this label, we sometimes lose sight of the fact that we really don’t actually know what is wrong with this little girl. She was given the CP diagnosis because nobody knows what else to call it. But, her MRI is clear, there was no obvious cause of trauma, and we just still have no idea why Maddie is the way she is. Sometimes this is okay - just accept her for who she is and move on with life. We have done that. However, we can’t ever stop searching. What if her condition is caused by something that can be corrected? The chances of this are very, very low, but I don’t think we will ever stop searching for answers and that is okay. She has a new neurologist now and it was very refreshing to have a fresh pair of eyes and ears trying to understand Madison. He did a whole new round of tests on her (12 test tubes of blood later...) Of course, this yielded nothing, which in some cases is very good news, but leaves us no answers. In my latest research, I have discovered something caused "Gluten Ataxia" which is very rare, but I am requesting her to be tested for this as well. This is something that can be treated by a gluten-free diet. Not likely, but we have to know... The scary thing is that we discover things on our own that she hasn’t been tested for - and we’ve trusted that the doctors have tested her for everything. But we are realizing that doctors just don’t know everything, and that is very unsettling...

Too much information, as usual, but it definitely feels good to get this all down in writing. When I look back at some of Maddie’s prior updates, I’m always surprised at the things I’ve already forgotten. Looking back also helps us all realize how far this little monkey has come. She has a pretty amazing life, this little Madison, and she keeps this family quite busy and on their toes. We wouldn’t have it any other way...