New Rules

After a couple of rocky visits to friends and family, I think we may need to have a talk about Noah coming over. We all know about Noah's impulse control (or lack thereof) and his sensory seeking behavior. These issues make it difficult for us to bring Noah most places. Typically as children get older your world to explore as a family opens wide, with Noah we feel the opposite. There are fewer places we can take him. We are trying to wrestle a spot between feeling isolated and not going places that set Noah up for failure. It's a constant walk on a tight-rope. Navigating the world with a special needs child is not easily understood, even our closest friends and family don't understand it. In fact, Owen understands better than most what it is like because he lives it every day, and every day is what it takes to know the realities of our situation. Coping with Noah and his special needs is a learning experience for us. It is also a learning experience for those in our lives.

My sweet baby has been in therapy since he was 9 months old. We are working as furiously as possible to help him learn to self-regulate his out of control behavior. We also spend a ton of time and money trying to teach him to play with toys. Seems like a funny thing to have to teach a kid until you step into a therapy environment and find its full of toys. Lots of special needs kids don't have the motor skills or cognitive understanding to play with many toys. When an average child sees a toy, they want to play with it, interact, pretend. When Noah sees a toy, he needs to touch it, taste it, bite it, then probably throw it around a little bit. It's just who he is and a product of his delays.

At home Noah has plenty of places to play. We don't have knick-knacks or anything down that couldn't handle a good throw. We also have bins of beans, cheerios, and outside sand and water with which he can get his sensory seeking ya-yas out. We have a high tolerance for mess and can clean with lightning speed. We think of Noah affectionately as our "Baby Godzilla". Now that doesn't mean we think you need to prepare for your house to be Tokyo, but here are some ideas that may make visits from us less stressful for all:

1. A quick sweep to get up any knick-knacks, breakables, or inedibles up. We need to remove anything that he can break and also anything he could put in his mouth that would be bad for him (like potpourri, flowers, mouthsize decorations, etc). Some things that may also need to go depending on the room: dog bowls, dog toys, picture frames within reach (if outside, pick up the dog poop). You may also want to consider blocking access to electronics, and anything filled with dirt, ash, mud, water if you don't want him to play in it.

2. If we need to avoid any rooms please speak up. We will not be at all offended if it's just easier to not go into the room decorated with fine china and priceless art. But please don't deny Noah access to the room where everyone is gathered. We didn't come to your house to sit by ourselves or feel isolated.

3. Noah needs something to do at your house. As we mentioned, he doesn't really know how to play with most toys, so that obvious solution is pretty much out. Right now he loves to fill things up and dump them out. I don't mind bringing him some bins and cereal, but he will get it all over. Geoff and I have no problem cleaning up before we go, but however Noah plays it will be messy.

4. Noah will try to entice you to wrestle with him but PLEASE DON'T (ATTENTION GRANDFATHERS AND UNCLES: RE-READ THIS SENTENCE)!! He doesn't know how to calm himself after he gets all excited. He will then challenge everyone else to wrestle regardless of how unwilling they are to engage. He also doesn't understand that wrestling is not appropriate with all people, like the little girl with Down Syndrome in his class that is half his size.

5. Sorry, but from here on out, we probably won't be able to attend family events and big get togethers. Noah gets so overstimulated and they last so long or start so late that it is a disaster. We hope this won't be a life long sentence. For holidays this may mean that Owen and Geoff or I stop by briefly, or we have you over in smaller groups to our home. We love our families and love spending holidays with them, but it just doesn't work right now. We ask for you patience and understanding as we try to spend time with you, spend time with each other, not feel isolated or excluded, but also not set ourselves up with a situation that we know to be an anxiety ridden failure. That is a tall order to balance and honestly, we are struggling to find our way.

6. Lastly, we want to ask you to accept Noah. Some people treat him like he just has a cold and one day it will be better, others treat him as if a cure will come soon, some still think he just needs the right medication or therapy to make him better. We wish it was that simple. The truth is, it is far more complex. As we wrote in a previous post, Noah's condition remains somewhat of a mystery, and chances are, it won't be getting better for a long, long, time if at all. It would help us if our friends and families accepted that Noah is who he is. Let's not pretend anymore that he is something different. Your job, like ours, is to help us make Noah the best person he can be with what skills he has. That acceptance makes it easier to employ the kind of changes we are asking. Noah needs a soft place to fall, not another complex room to navigate.

I know it feels like we are asking a lot from all of you; we are and we know it. But we want to feel welcome in your home, all of us. It is miserable when Geoff or I need to chase Noah around someones house because there is just too much for him to get into. It means we can't have a conversation, or even sit down. We love our friends and our families and really want to be apart of your lives. We hope you all decide that we aren't too much work.

Amy and Geoff

Race Day Recap!

June 19th, 2010 is a very important day in our house. Our team Noah's Noggin regrouped to participate in the Epilepsy Foundation NW Race/Walk for the second year. This day is so very special to Geoff and I because it means so much to us that our friends and family will donate, raise money and give up their Saturday morning to show their support for us and our Noah. This is the day that makes us feel that we aren't alone but are surrounded by people who share our fight to find a cure for Epilepsy; That we have your love as we try to find our footing as parents of our special needs Troublemaker.

This year we raised nearly $1000 over last year's figure of $1755.55. That is something I am immensely proud of. Our final tally is $2660.00. Although our fundraising was dramatically stepped up this year, it was not enough for us to win a trophy. The entire race is a bigger event this year and all of the teams really increased their fundraising. But, you know, I am just fine with not winning if it means more money to help those with Epilepsy.

Thank you, thank all of you who raised money and made us feel so loved. I hope we have all of you with us again next year!

The Search Continues...

Our little Noah is still without a diagnosis, we know Epilpesy is an umbrella diagnosis that categorizes his seizures but it does not explain the greater global delays he has. Like any parent would in this situation, I have been reading endlessly to find an explanation and it has only been in the last few weeks that I found something: Sensory Processing Disorder. What is Sensory Processing Disorder (SPD) you ask? It is a neurological and nervous system disorder where Noah needs a lot of sensory input to understand his surroundings. Put simply, it is why Noah had to throw himself on you, bang his head on the couch/table/floor/pillow/bed, cram everything into his mouth, and play in water/mud/barkdust/sand. SPD is often an issue for children with an Autism diagnosis. For children with Autism, SPD can manifest itself with being overly sensitive. Those are the children who can't stand to feel grass on their bare feet, the tag in their clothes drives them crazy, and certain food textures gag them.

Unfortunately, we know that these are not the full extent of Noah's issues. He has global delays, which means in every developmental category (cognitive, speech, gross motor, fine motor) he is significantly delayed. When assessed, Noah's skills are repeatedly found to be those of a 1 year old. Noah is no longer a baby, he is 4 years old next month. We don't have a name for what is going on with Noah. One doctor thought maybe Autism, but that hasn't been agreed upon with other doctors and just has never felt right to us. He is far too engaged with people, far too social.

Through our blog another family with a child very similar to Noah found us. Their son is 8 years old and still experiencing the same issues as Noah. Now, I am speaking for someone else so I may be misstating some information, but their son also has seizures and global delays that are extremely similar to Noah's. They also have been given the "maybe your son is Autistic but we just don't know" talk. There may some day be a disorder named after our boys, because so far, no one can tell us what our children have and what to expect.

We are doing everything we can think of to help Noah gain skills that will make his life and ours easier. Some days I feel like we see such immense progress. He has some ASL (American Sign Language) signs, we think he can say "DaDa" for Geoff and "down" and I'm pretty sure he yelled "up" at me the other day when he was mad. But these are word approximations that I don't know if others would hear. He is much better most of the time around other children. He seems to understand that they don't like to be hit or dived upon. But other days it still feels like we have so far to go: when he threw a french fry in some woman's hair at McDonald's, or when we had to leave a 4th of July party after 25 long minutes because between the fire pit, kiddie pool, dogs, associated dog poop, and men to wrestle with, we just couldn't get him calm enough or find a safe spot for him.

So, we are learning to navigate our way through the life of a parent of a special needs kid just as Noah is learning too. It is a precarious balance between living a "normal" life and trying to give both of our boys a lot of learning and fun experiences and not putting ourselves in situations that are extremely stressful and plain just not fun. Some times we have great successes and some times we have spectacular failures, but we can just keep trying and learning. As long as we can get through this with more smiles than tears, I think we are a success.

-Amy