Angels Among Us

Wade and I have been in VA for the past two weeks. He's been doing some experimental treatment that I'll blog about in a few days. It has been a very nice and relaxing escape from reality. While staying here, we're able to come and go as we please, so we took the opportunity on Friday afternoon to enjoy the beautiful spring weather.

The first stop on our stroll was Walgreen's Pharmacy. Wade was already a little fussy because he was ready for lunch. As I was trying to console him at the end of an aisle, I looked up to the sound of a girl saying, "Hi. What's your name?" Wade was immediately mesmerized by her. He instantly stopped screeching, his eyes sparkled, and his frown turned into a shy grin. The girl continued to talk to him as she signed "I love you" over and over. She asked where he went to school, and I informed her that we were from TX. She said she had gone to a special school, but she wasn't able to go to college. She was so well spoken and polite and totally enthralled with Wade. She then blurted out, "Don't believe the doctors. They don't know what they're talking about." I said, "Yeah I know. They aren't God, are they?" She proceeded to tell me that the doctors told her mom that she wouldn't ever walk or talk, but she learned to do both at age 4 or 5. "So don't believe those doctors," she said.

After a few more "I love you's" and small chit chat with Wade, she reached out her hand to me and said, "I'm Amy. What's your name?" I was really struck by how mannerly and polite Amy was. There was an odd feeling surrounding me during those brief few minutes. While she was talking, my mind was swirling as I watched this beautiful interaction between her and Wade. "Don't believe the doctors" kept playing through my head as I was calmed by her presence.

All of a sudden, almost as quickly as she had appeared in front of us, she said, "Well, I have to go. I'm sorry to have bothered you. It was nice meeting you." I replied that it was a pleasure and not a bother at all. As she started to walk off, she turned back to us, held up her finger and said, "What's his name again?" I said, "Wade." She said, "Oh yeah. Well, I'll be praying for you." Then she kind of ran down the aisle and left.

As we turned to walk, I looked around to see if I could tell who Amy was with. I was intrigued by Amy and her ability to connect with Wade so easily. But there was no sign of anyone. Maybe someone was outside waiting for her. Maybe she walked to the store on her own. Or maybe she was my angel on Earth sending me a message to keep pursuing different avenues for Wade and to remind me that there's always hope. Because we all know that doctors don't know everything.

What's So Special About Being "Special"?--Day 2 Part 2

As usual, I'm a little behind on posting. Life is crazy though. Back to the inclusion conference...

The first session after lunch started out a bit rough. I decided to go to the session entitled Conflict Resolution Skills Leading to More Effective Parent-Professional Collaboration.  I thought it would be a great way to for both parents and professionals to try to understand where each party is coming from. I should have known it would be a complete waste of time when the 29 year veteran teacher next to me got irritated when I asked her if she could scoot over one seat so that Kelly could sit down. From that point on, the lady did.not.shut.up!!!!

SIDEBAR--For the record, teachers can be the rudest audience! And I'm allowed to say that because, up until last year, I was a teacher:-) For those professionals reading, if you really don't want to go to a conference and listen, stay at work. I understand it's a day--or three--out of the classroom, but if you're going to be closed minded and talk throughout sessions, please just stay at work. Or better yet, take a personal day and let your district use their precious funds for something else.  And to the teachers that do want to take information back, we parents REALLY appreciate you. We did meet a few amazing professionals! Sorry.  Just had to get that off my chest.--RANT OVER

Needless to say, I didn't gain much from those two hours. The presenter actually had some good information, but others in the room chose to ramble about their own personal beliefs/stories, so I think things went in a different direction than what was intended. The presenter was from an organization called CADRE, which is The National Center on Dispute Resolution in Special Education. Basically, an organization that tries to mediate between school and family in an effort to stay away from due process. The main point was that both parties really need to collaborate together to meet the needs of the child. We need to separate the people involved from the problem. Each party (school and parent) is going to take a position, but in order to effectively come to an agreement, you need to know what interests and reasons are driving that position. Ask questions. Powerful, open ended questions. Delve deeper into what's really going on. Personally, I think the biggest mistake we all make is assuming we know the reasons behind the positions. If there is open dialogue, there is less room for assumptions.

The last session of the day challenged my thinking in ways I didn't expect. The name of the session was Politically Correct or Just Common Sense? I'm against the use of the "R" word. I stand up for Wade and push for what I think is best. I'm educated--to a degree--in special ed law. If I don't know the answers, I know where to look and who to go to. And considering I was at an inclusion conference, I totally believe in inclusion. During this session Laura Buckner, an absolutely fabulous person and mom to a son who has a disability, really convicted me of the language I use and the way I describe Wade to others.

People First Language--the idea of putting the person before their disability--is something I've embraced over the past couple of years. It comes pretty easily to me now. For instance, instead of saying, "That boy is autistic," you would say, "That boy has autism." Just a slight difference in the wording can make a huge impact. A person is so much more than their disability. By saying "autistic" instead of "has autism" almost implies that the person isn't capable of doing/being anything else except "autistic"!  In fact, a couple of days before leaving for this conference, the vet called to tell me that my dog is diabetic. I thought to myself, "No she's not. She HAS diabetes." It's become so ingrained in my language that I find myself cringing whenever someone doesn't use People First Language, especially when they're referring to their own child.

The use of the "R" word--retard--is also something else that I feel strongly about. I understand that it is a medical term to describe a delay. However, when the word is being used in a derogatory manner, I find HUGE issue. By saying a situation is retarded or by calling someone acting goofy a retard, you're essentially ridiculing someone who has an intellectual disability. I realize the majority of the people using the word mean absolutely nothing by it. But when you have a child with a disability, the word hits a little close to home. Words hurt. Period. As far as it being seen as just being politically correct? Well, when a group of people who "are" that word stand up to say it's wrong and that they would like to see the word disappear, then it goes way beyond political correctness. The people who are hurt the most--the people who have a disability--are asking for us to stop using the word. It's the same thing with the word "gay" or the "N" word. A group of people who "are" that word stood up and demanded that the language change. Not out of political correctness, but out of respect.

When I tell people about Wade or describe him to others, I typically mention that he has cerebral palsy. Not because this defines him, but I think it will help answer questions about him when they see he doesn't walk or talk or doesn't do other things a typical three year old does. I tend to focus on the things he can't do when talking about him. After the session I really had to do some soul searching about this one. The biggest reason I can come up with is because of my own insecurities. I feel like if I tell people he has cerebral palsy up front, then we avoid any embarrassing situations. If I tell people he has cerebral palsy, I don't have to explain why he can't respond to their greeting. If I tell people he has cerebral palsy, I don't have to step out of my comfort zone. But if I continue telling everyone he has cerebral palsy as a basic introduction, I'm skipping over the most wonderful and amazing and cheerful and energetic and happy-go-lucky little boy I've ever met. I'm still working on it, but this session has definitely challenged me to find a way to describe Wade in a positive light, leaving out everything he "can't" do.

Then we get to the word "special". There has always been a little part of me that has cringed when saying my son has "special needs". I've never really been able to describe why, but "special" just seems kind of belittling to me. But, I've used the term because everyone else does. What else am I supposed to say? Well, Laura let us all know that she doesn't like it either. Through her I finally got a grasp on why I dislike the term so much. Basically, it invokes pity. Almost every time I tell someone that Wade has special needs, in response I get, "I'm sorry." Or, "God gave him to you because you're the perfect mom." Or, "You're so strong." Or, "It takes a special person to raise a child with special needs." Or the best yet, "I could never do that." Never do what??? Raise your own child to the best of your ability??? Really??? But it's in those statements that I know what people are really saying. "Glad it's you and not me." Along with all of those comments comes the sad look. The look of pity. So really, what's so special about being "special"? I don't want to be special. I don't want to be an outsider. I don't want to be looked at differently. I don't want to be put up on a pedestal. And I sure has hell don't want anyone to view Wade as "special". He has a disability. That's it. Because like Laura said, being "special" at age 20 just isn't as cute as it is at age 2.

 

Universal Design for Learning--Day 2, Part 1

The Inclusion Works Conference is geared for parents and professionals, with a pretty strong emphasis on professionals. Math is not my strong suit, but if I were to guess, I'd say the big ball room consisted of about 75% professionals, 25% parents. I was strongly encouraged to attend as a parent because knowledge is power.  If I know what teachers are being taught about inclusion, I am better equipped to help guide my own school district.

The mornings started out with a general topic over breakfast for an hour. Afterward, we were able to choose the breakout sessions that we wanted to attend. There was one session before lunch and two sessions after lunch. I ended up opting for sessions that could really benefit professionals and parents. While co-teaching is exciting, I really didn't want to sit through a session on how to implement it in the classroom since I'm no longer a teacher:-)

Thursday's breakfast session was an "Eavesdrop on the Experts". While eating some yummy, cheesy egg casserole, three amazing women in the field talked amongst themselves about some things they are excited about in regards to teaching and inclusion. If you aren't familiar with Dr. Paula Kluth, Dr. Wendy Murawski, and Dr. Lisa Dieker, I highly recommend looking them up. And if you ever have the opportunity to hear them speak, you should go! We also received a copy of the not yet released book Collaborate, Communicate, and Differentiate! by Wendy Murawski and Sally Spencer. It focuses on increasing learning in students across the board, including those with special needs.

The first breakout session I attended was "Universal Design for Learning: Providing Access to the General Curriculum for ALL Students", facilitated by Kirk Behnke. I think the most important information I walked away with from that session is that in order to modify the curriculum, you have to accommodate the student. That student is not necessarily a student with disabilities. The bottom line is, we all learn differently. Some of us are visual learners, others are auditory. Some of us need to move around while we work, some of us need peace and quiet. In order to be an effective teacher, the material needs to be presented in multiple ways. In effect, the knowledge of the students needs to be assessed in multiple ways. By doing this, teachers are creating an atmosphere in which every student can be successful. It's the essence of UDL.  To me, it's the perfect way to include kids with disabilities in the general ed environment.  To get a better understanding of what I'm trying to say, look here.  

I also think technology plays a HUGE role in classrooms today.  Educators need to accept and incorporate technology into the curriculum.  Technology is such an easy accommodation for kids with disabilities.  And how exciting if everyone in the class has the same accommodation???  Then the students with disabilities don't stand out like a sore thumb!  The following video spoke volumes.  It was kind of like my "a-ha" moment in how to successfully integrate students of every ability level in one classroom.  We're all different.  Why are we all expected to learn the same way?

 

*  Handouts for all of the sessions from Inclusion Works can be found here.

Inclusion Works

The Arc of Texas just sponsored their 18th annual Inclusion Works Conference this past weekend. As a teacher, I was always interested in attending, but it never worked into my schedule well. As a parent, I was determined to make it there this year. I am so glad I made the effort to arrange life to make it happen. It's not easy coordinating Wade's therapy and school with Curtis' schedule. Thankfully my mother-in-law was able to help us out as well.

My dear friend Kelly and I headed to Austin Wednesday afternoon.  There was a brief introductory session Wednesday evening, and the conference ended late morning on Saturday.  I honestly didn't know what to expect over those few days.  All I knew was that I wanted to get my hands on any information that could help build my cause and support my opinions on inclusive classrooms and communities for people with disabilities.  In my heart, I know what's right.  EVERYONE deserves to be included.  It's a basic human right.  But for some reason, when you have a disability, you have to "earn" your way "in".  When I'm surrounded by people who think Wade and others have to work harder to be included, I start to falter.  While my heart is crying because I *know* I'm right, my brain starts playing tricks on me as their words invade my beliefs.  My biggest hope was that over the course of the conference I would meet people passionate about inclusion who could help guide me when I felt beat down in this fight.  Little did I know, not only would these facilitators give me amazing information, but they would actually even challenge some of my thoughts that I believed were okay.  It's funny how you can be going along thinking you're pretty strong in your beliefs, and then someone can come along and say something that completely rocks your world.  I think it's important to be challenged though.  It keeps me thinking and encourages me to continue the fight for inclusion.

Over my next few posts, I'll share some of things I took away from this amazing conference.  I hope you'll be able to gain some information on inclusion from my upcoming posts.  If you have any questions, or need any resources, let me know.  I'll do my best to help.  Until then, check out this cool website:  www.iamnorm.org  The I am Norm campaign is run by a group of young people from across the country to help promote inclusive practices in schools and our community.  Two members of the campaign came and presented Wednesday evening.  I was in awe at how comfortable these two young people were in front of a few hundred adults.  It was proof to me that one voice, no matter the age, can make a huge difference.  Check it out and see how you can get involved.  You can also join them on Facebook.

There's a Light At the End of the Tunnel

I don't often go through the days thinking about the beginning of this journey with Wade. Every now and again, I'll see a picture or smell a scent that will jog my memory and make me stop for a minute. There are certain things that will immediately take me back to the hospital. The sanitizing soap they used in the NICU is a very powerful trigger. When I smell it, my stomach automatically flips. I still can't drive downtown around Cook Children's without my heart pumping just a little bit faster. But for the most part, I focus on the present and all the strides Wade has made. However, the past couple of weeks have caused me to relive some of those very terrifying and heartbreaking moments.

Some friends/neighbors of ours had a beautiful baby boy on January 19. Cooper was having some issues with feeding and twitching, so he was admitted to the NICU. The past three weeks have been a roller coaster of emotions for this family. There have been some answers, wrong answers, no answers, partial answers, and mainly just confusion. There have been tests that have come back positive, some negative, some borderline. Again, just confusion. Yes it's genetic. No it's not genetic. It might be genetic. Then, the worst news ever was delivered. The parents were told that if Cooper didn't get better soon, he would die. Although, if he did get better, his life would be short. As I read that text, I felt as if I had been punched in the gut. From what I understood to this point was that Cooper had hypotonia so severe that it would eventually make breathing too difficult. I told Curtis that I just couldn't even imagine...

Then, I stopped. Yes, I CAN imagine. We've been there, done that. We've walked in their shoes. Wade has cerebral palsy which fluctuates between high and low tone. Which is hyper and hypotonia. How can I even say that I can't imagine? The only reason I have is God. By the grace of God, He took the most tragic and horrific thing that has ever happened to me and turned it into the most wonderful blessing. In the process, He healed the pain, and He has helped me "forget" the sadness, loneliness, and fear. It took awhile, and I didn't even realize how much I had "forgotten" until I said, "I can't even imagine what they're going through."

I remember laying on the operating table wondering how I was going to go home without a baby. How was I going to tell everyone that I had been pregnant, but I didn't have a baby to show for it? I remember the sound of the resuscitator as they tried desperately to get Wade to breath. I remember the chaplain coming to talk to me, and I didn't want to see him because in the movies, when the chaplain comes, it's all over. I remember the hospital making an exception and letting the flight crew bring Wade in so I could at least see him before they boarded the helicopter. I remember the confusion in my OB's face when he told me he just didn't understand what had happened. I remember the staff not wanting to make eye contact with me. I remember my heart stopping whenever Curtis' phone would ring when we weren't at the hospital. I was so afraid it was going to be "that call"; the one where they told us he was gone. I remember being scared to enter the NICU because I was terrified that Wade wouldn't be in his bed. I remember praying that the MRI wouldn't show any brain damage but knowing in my heart that there was. I remember not being able to cry the moment the doctor told us the results because I did already know. I remember the neurologist telling us that Wade would never walk or talk and that he'd be in a wheelchair for the rest of his life. Then, one phone call changed it all. I remember vividly sitting on the ottoman in my living room, and Dr. Nedrelow called. He had been off for a few days. The first thing he said was, "I have one word for you. WOW! This is NOT the same baby I left a few days ago." In that moment, I knew that everything would be okay. Not what I had imagined, but there was finally a light at the end of the tunnel.

I've been praying for baby Cooper to have his "WOW" moment. Thank God there was an absolutely amazing update on Sunday. When Chris and Alison arrived at the hospital, Cooper was sitting in a bouncy seat awake. He had also woken during the middle of the night and seemed hungry. Some of his levels that had been high were coming down, and the sonogram of his diaphragm was normal!!!! At this point, it looks as if some of his "episodes" have been caused by aspiration from bottle feeds. The doctors are stumped. So, in my eyes, Cooper has had his "WOW" moment!!!! Please pray that Cooper continues to amaze everyone and fights to prove the doctors wrong. God is doing wondrous things with this small and fragile life. It just so happens that I came across this verse yesterday:

His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." John 9:2-3



None of us know the end of this story. God has a plan. But I pray with all my heart that God allows Cooper to continue healing so that he can grow up being a testament to Him. I also pray that the painful memories of this tragic situation begin to turn into blessings for this amazing and faithful family. I pray that they are able to see the light at the end of the tunnel. Please keep this family and baby Cooper in your thoughts and prayers.

The following song came on the radio on one of our trips back from Cooks. It became our theme song for our journey into the unknown with Wade. Hopefully it will offer some peace to Chris and Alison as well.


*Disclaimer: I did get permission from Alison to talk about Cooper's struggles. I didn't want to go into too much detail because it's not my story to share. But, I wanted to write about him so that others can pray for this precious baby. And of course, the story hits a little close to home. I wake up in the middle of the night thinking about Cooper so I thought this might serve as an outlet for my "forgotten" emotions as well.

Joy

This morning, as usual, I was in a rush to get Wade to therapy. I then had to rush to make a doctor's appointment for myself. I'm ALWAYS rushing, but never feel like I'm ever getting anywhere. The only thing I'm gaining is more stress. In the doctor's office, they had placed out a flyer about joy. I thought it was perfect considering the rush of my morning. I thought I'd share as a reminder to everyone that we need to slow down and enjoy life more.

Eight Ways to Restore Your Joy

~ Stop! Be still! Relax! Pray! Meditate!
~ Count your blessings. Start now!
~ Dance as if you were a star; particularly if you have no rhythm.
~ Give the gift of a smile. After all, it's free.
~ Give yourself a simple reward for each small victory.
~ Sing your favorite song loudly; even if you're off key.
~ Laugh 'til your belly hurts; especially if it's not funny.
~ Wrestle negative thoughts to the ground with positive ones.

Take the time to discover your joy for life!

A Mini Mission

Navigating the "rules" in the world of disabilities is sometimes hard to figure out. A lot of times, you don't know what those rules are until you break them. For instance, at the beginning of the school year when I was dropping Wade off at school, I pulled all the way up in the parking space. Little did I know, I was blocking a little cross walk area that leads you to the ramp on the sidewalk. I quickly figured this out when someone else made the same mistake and blocked our entrance to the ramp. So now, I don't pull all the way up. And for the record, neither does that particular car because I ever so nicely pointed it out to them! It's amazing how many things are now thrown in your face that you never thought you'd give a second thought. You tend to see the world and your environment with a new set of eyes. You constantly scan sidewalks for a ramp to make sure you know the best place to cross the street with a wheelchair . You take note of different places you go so you'll know if you can return later with a wheelchair. You get a little nervous when traveling through the airport hoping to rely on the kindness of strangers to help you get through that circular automatic door. You remember which playgrounds are the most accessible for your child and their wheelchair. And the biggest for me? You learn which handicapped parking spaces you can and can't use!

This issue has become one of my biggest pet peeves. We have a Sienna minivan with a side entry, automatic ramp. Typically, wherever I go, there are handicapped spaces always available. Yes, they're available, but they're NOT available for US! In order for me to lower the ramp AND wheel Wade off the ramp, I have to park in a space that is "VAN ACCESSIBLE".

Of course, we can park in a typical handicapped space and even lower the ramp, but then Wade is stuck on the ramp because there's not enough space to drive the wheelchair around the end of the ramp. And there's no way I can lift a 300+ pound power wheelchair over the edge! The space next to a "VAN ACCESSIBLE" space is extra wide. There is a reason these spaces exist. They are NOT for compact cars!!! I understand that sometimes nothing else is available, and the only spot left just might be one for a van. So, you gotta do what you gotta do. However, when you whip your little car into the very first handicapped space you come to--when there are at least five more down the row--and I am forced to park in a regular spot praying that when I leave there isn't another car parked next to me blocking my ability to get the wheelchair up the ramp, I get a little upset. I totally understand that this is a "rule" that a lot of people don't get. Since they've never been faced with the issue, they don't know. If they're able to walk on their own, they've probably never even given that extra space a second thought. But, if you read this and you have a handicapped parking permit, now you know! Please don't take our van spaces if you can help it!!!! Life with a little body in a big wheelchair is already challenging. Please don't make something like going to church a huge process for us.

This is my new "mini mission". If someone happens to be parking in a "VAN ACCESSIBLE" space while I'm parking, I will nicely explain to them the little conundrum I face at least once a week. If you don't know the unspoken rules, that's fine. But once you do, I hope you follow them in the future.