The Latest and Not Necessarily Greatest News

After a tough couple months with our little Noah, we decided to make yet another attempt to find a diagnosis and get some treatment advice. Noah is still a happy and charming little guy, but his skill acquisition seems stagnant. Most directly effecting our day to day has been his behavior issues. He is out of control and difficult to manage pretty much anywhere outside our door. So, once again we head to the hospital for some answers.

For nearly four hours Friday morning we were at Doernbecher Children's Hospital. There a Psychiatrist and Developmental Pediatrician examined him and watched him play. The hope being that some sort of pattern would emerge in his behavior that would clue them in to what is really going on. So, once again Geoff and I retell his medical history, explain his behavior, diagram his skills. All the while wondering why this isn't recorded from the 120 other times we have had to tell some medical person all of this.

At the end of the appointment we were left with little more than shoulder shrugs. The developmental pediatrician is referring us to the Autism Diagnostic Team so we can retell our story again. She felt however, like us, some of Noah's behavior may fit with that diagnosis, but some of his behavior does not. Most significantly, I don't think you can receive an Autism diagnosis if you are engaged with people which Noah very much is, he just doesn't understand how to communicate appropriately.

The Pediatrician also called Noah "mentally retarded", which outside of the juvenile urge to say "no, you are" was no surprise. Obviously, that is an ugly phrase, the doctor even seemed hesitant to say it. However, over the last year Geoff and I have been quietly coming to terms with the likelihood that Noah is "intellectually disabled" and no longer just a child with delays. Again though, we are left with a blanket term, like Epilepsy, that is describing a symptom of something, but not a diagnosis on it's own.

When talking about treatments to help him we got more of the same. I don't know if it's a testament to our awesomeness, but we have been doing all of their suggestions since Noah was a year old. He is in Early Intervention, enrolled in CDRC (Childhood Development and Research Clinic) at Doernbecher, we have paid ungodly sums for private therapy, and I work with him constantly at home.

So, where do we go from here? We will meet with the Autism Team only because that diagnosis would open doors for more services at school. And then I think we will be taking a big break from the pursuit of a diagnosis. I think Geoff and I both walked away thinking the medical community just hasn't caught up to Noah yet. --Amy

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

97 Days

I was at work upstairs. My desk is right next to the window which is usually open on warm days. The room gets a nice breeze which seems to mock me as I send out each email. Occasionally I hear the cackle of two boys playing in the sandbox, a mother correcting some behavior, sometimes I even get to smell a grand breakfast being prepared on the grill outside. But Monday, June 21st I heard Amy ask Noah if he was okay, followed by her telling O to get Dad. I knew when I heard her ask Noah that question that the string of 97 days seizure free was broken.

It has been a long time since we have been able to say ninety plus days. We have had the occasional month with no activity, almost got to two months a few times, but never ninety and certainly not ninety-seven. We can most likely attribute this to the medication he is on. There is also a possibility that he is growing out of the earlier form (which seemed to knock him around at least once a month with seven to ten seizures in a single day) and moving to more complex form. Not nearly as frequent but more powerful. In the end, who knows? The doctors continue to be at a loss however, we don't dwell on that much. Our job is to just help Noah be the best he can be.

The seizure was short, no more than thirty to forty seconds, but the after effects were strong. It took The Fighter nearly a full week to reach his baseline, a full week to regain his muscular control and body sense. Like always though, he came back. He can take a punch, he may be pushed around, but he will get right back up and flash you that smile that melts your heart. He will look at you with the most penetrating blue eyes, and the child who only says two words, will speak a thousand with one look. "I am fine Dad, I can take the punch. Just hold onto me, give me that snuggle that tells me the shaking will go away. Together we can do this." Noah, we won't back down. Ever.

For the Fighter:



Best,
G

On the Brighter Side of Things

I've always been a pretty positive person. Without trying very hard I enjoy myself almost anywhere and can see the bright side of nearly any situation. I have a perfect example. I went on a trip to Mexico with my best friend, Amanda and her sister (also, my friend) Dana several years ago. When we got back from that trip Amanda and Dana would joke about what a terrible trip it was. The first time they did, I was like, huh?

To give you the highlights:
-- The first night we are there Dana realizes she is pregnant with her son, Justin, and can't drink; On a Mexican vacation-no alcohol, I don't think its ever been done before poor Dana had to endure it.
--Mexico was also experiencing some sort of cold front, so it was freezing cold the whole time we were there. We sunbathed under newly purchased blankets by the pool.
--We went for a horseback ride and my horse who I had nicknamed "Muy Mal" had diarrhea and I thought was going to die beneath me.
--Dana had menu mishaps wherever we went. Ordered chicken fajitias that were so gross the street dogs were not even interested and got a seafood pasta that smelled so bad it put me off my own dinner.
--We had wild dogs attack our rental car, got lost in the same rental car in some shanty town where I thought we'd never make it out alive.
--On the way home we had a multi-hour drive to get to the airport. In Mexicali, which we had to drive through, there was some sort of saints' day parade blocking most of the streets and locals had decided that was a good day to burn all the garbage in the city making it a hazy, lung chocking mess.
--The delay in Mexicali meant we missed our flight and had to wait 12 hours for the next one. Amanda was so exhausted and sick by the time we got on the plane that it was the first and hopefully last time I get to witness someone using the barf bag the airline provides.

Somehow through all of that I still walked away thinking I'd had a fine vacation. I think I have proved my point on how I look on the bright side of things. I have always thought of life as a journey and it's not good or bad but will always be, for everyone, a mix of the two. I think that attitude has helped me enormously with coping with my sick child. And luckily, I think little Noah has inherited my attitude.

Some once asked me if I would wish Noah to be different. You know, of course I wish all the time that he didn't have to work so hard to gain every new skill and that he wasn't plagued by seizures that scare us all. I don't, however, wish he was different than who he is. I am so immensely proud of Noah. He works so hard at school, therapy and with me at home. He does it all with a smile and giggling. Noah is trying, right now while I am writing this, to make me laugh. He loves people and you know when Noah loves you. He greets you with crazy giggles and a huge hug. If he really loves you he may include a bite because he is just so darn excited to see you. I would never be ashamed that he is a special needs kid. Noah is awesome.

Special Needs is the New Black

It just so happens, without intending to, I have read several novels about parents raising their special needs kids. "House Rules", "Windless Summer", and "The Memory Keeper's Daughter", were dramatic stories where the families really struggled with their child's special needs. In each, the fictional families were surrounded by hostile adults who judged and isolated them. One book even went to so far as to have the characters in this modern small town think the fictional girl with autism was a witch.
I am not sure if the books are inaccurate, I am really lucky, or times are changing. I prefer to think the last one. I feel so fortunate that I have never had a problem with any adult being rude or unkind to me once they understand that Noah has health problems and developmental disabilities. Maybe an occasional funny look at the grocery store when he has decided to amuse himself by squeaking like a seagull. In that instance, I am willing to believe they are just glancing over and not judging us. Special needs kids are experiencing a media blitz. Granted that means everyone wants to call Noah autistic, which isn't his diagnosis, but people I think are more aware and more compassionate.
It is an odd situation though, when someone is looking at Noah and then looking at me to explain. Sometimes I just feel that his story isn't something I need to explain to anyone and everyone we meet. Other peoples' medical histories get to be private. That may seem strange considering we write a blog about him. But I really see our purpose here to update those who know and love us, to offer compassion to those who live like us, and to offer insight to those who don't have special needs people close to them. And this sharing is on our terms and we get so much from all of you too. It isn't just to satisfy some stranger's curiosity.
I do think that I haven' yet experienced the full public scrutiny of public outings with my special needs child. Noah is only 3. People often don't notice he's non-verbal, they just think he's being shy when he doesn't respond. A temper tantrum or needing to be carried aren't too out of place for your average 3 year old.
Our sense of isolation is more self-inflicted. Noah does have some behavior issues, that are getting better, but still can make socializing so hard. We played in the backyard instead of out front yesterday because he was "too hitty". The only kid who enjoys his company is sweet little Courtney, who blew him kisses threw the fence. Other kids are scared. Kids his age and some of the older kids don't understand that he is just trying to play when he is too rough. Because, really, in that hugged-too-tightly kid's mind, it doesn't matter Noah's intent only that they didn't like it. One of the older neighbor kids, Melanie deserves a big kiss from me because she always says hi to him and interacts with him for a minute before going off to play. Our friends and neighbors are as understanding as can be. So our sense of isolation is no where near as profound as in any of the books, but we need to push Noah's chunky butt over this play skills hurdle so we can go to the playground, outside, the library without me hovering over him ready to apologize.
We are all still learning. Noah's skills are growing. He has great days at school, is getting play skills therapy from his occupational therapist, play ground help from his physical therapist. Geoff and I reinforce what he learns in these environments at home. And I am learning how to be an advocate for Noah, how to come out of my shy personality to speak up for what he needs and who he is. But I feel and hopefully this feeling won't change, that the world is ready to embrace children who don't fit the mold and who struggle. I hope so sincerely that this trend toward understanding children and parents of children with special needs continues to be warm, embracing, and inclusive to societies most vulnerable people.--Amy