I have been pretty quiet lately, and with good reason. We've been very busy in the Taylor household, watching miracles, following dreams and just living life. Let me see if I can fill you in.
I'll start with the miracles. Travis is actually learning how to eat! About 3 or 4 weeks ago, he was sitting at the table "eating" animal crackers and we were trying to show him how to swallow (not so easy). He started watching us, and then all of a sudden, he did it! We could not believe it. Usually, he rolls the food in his mouth and then spits out little pieces. That day, he swallowed all the pieces. We were in complete amazement. Since then, his food of choice is animal crackers, and he eats them like a pro. He was doing so well with it, the new oral-motor therapist said to bring something new this week. I had a little snack tray prepared for therapy on Monday, and he chose a slice of cheese. We worked with it in therapy, and it took him a little bit to chew it up, but he swallowed all the pieces. He's not sold on it, but it is a huge start. His therapist says she has had many kids who have to have their food presented one at a time until finally the child gets comfortable enough that he will try things without a fight. Sounds good to me. We're still a little away from eating meals, but certainly a lot closer than we were! Speaking of...we had a visit from the Pediasure Fairy again last night. We were out picking up a prescription, and when we came home there were two bags full of Pediasure 6-packs in front of the garage. I wish I knew who to thank for this gracious gift. I hope whoever you are, that you read this blog. We are completely blown away by the kindness.
Besides the eating adventure, we had another praise a few weeks ago when we went for the Student Study Team meeting for Travis' school evaluation. You might remember all the venting I did and the emotions I felt during that whole process. It was not a shining moment for me. However, God brought us through and gave us the advice, wisdom and strength we prayed for. Sean and I went to the IEP meeting ready to be defensive, but we were thrilled and proud of the reports we were given. Travis did very well on the evaluation and was within "average" limits on most of them. He actually was in an "advanced" range for school readiness components on one of the tests that was geared for children with communication delay. His evaluators told us that the wonderful thing was that all the factors they use to make these reports (testing, parent/teacher report, observation, etc.) all showed a picture of the same child. In other words, what we see at home and his teacher sees at school, is the same kid and that the test results showed. The evaluators were very confident with their findings, and I am too. I cannot thank them enough for taking the time to get to know Travis, look past his issues and see the incredible potential he has.
One of the biggest victories was when the team recommended discontinuing the "developmental delay" label. That was very significant for me. Travis is an extremely bright child, very creative and very mature in some of his thought processes. However, some of his sensory issues and concentration difficulties can sometimes cloud other people's interpretation of him. I am so proud that he was able to show the team all of those strengths and they were willing to give him credit for it. So, his new label for SCPS services is "orthopedically impaired." And, this means that the team's recommendation is that he go to a general education classroom. While I am thrilled with that, I am scared about things like safety, self-help skills and eating. My first choice for a kindergarten next year is at UCP. I feel they have done a good job of being able to provide enough support for his safety, and they are very willing to work with the eating issue. They've also been very courteous to me by allowing me to check-in on him whenever I need to. But, at the IEP meeting, we were informed that there are not enough kids signed up for kindergarten right now, and unless they get more they will be unable to offer the class next year. The public school that SCPS has recommended is Winter Springs Elementary School, because they have the support (therapists, extra teachers/assistants, school nurse, etc.) to handle the "orthopedically impaired." I am not quite sure what to do. Part of me wants him to go and have that experience. Part of me wants to keep him home. I am going to try to arrange a tour of the school and meet with the principal and/or teacher soon so I can figure it all out. We're praying about it, so I know God will show us the right choice.
Emily, my 2-year-old daughter who thinks she's 35, is doing well too. She's hillarious. I've talked before about how she loves animals. She really does have a soft-spot in her heart for puppies and kitties. Mandy taught her some "dog" tricks and Emily likes to pretend she is "Lucky" the dog and do the tricks as Mandy calls them out to her. We were at my mom's house tonight, getting ready to leave and Emily got all bent out of shape (she never wants to go home, so she's always upset when we are out and tell her it's time to leave). Mandy said, "Hey Lucky, come here." Emily pouted her lips, looked and Mandy and said, "I can't be Lucky right now, Mandy, I have to go home." Seriously, that's what she said word for word. She comes up with stuff like that all the time. Right now her other talent is singing. She sings every song that comes on her morning "shows" and the other night she and I were at the store, I was looking at something, and she started making up her own song. So, here's my prediction, Emily is going to grow up to be the first singer/songwriter veterinarian. If we could just get her onboard with going potty. She's smart enough, and understands it, but too stubborn to do it. She tells me "I like being a baby momma, and wearing diapers." What do you say to that?
The last thing I want to write about is something very near to my heart, and very exciting. I know many of you have already heard me talk about it, or read about it on Facebook. I'm starting a parenting magazine for special needs families. It's called Florida Crossroads, and is a statewide publication that will provide parenting tips and suggestions. The motto is: information, inspiration, inclusion. The idea behind the magazine came during those low-points in Travis' school evaluation. So hurt by the injustice of that whole process, I wanted to find a way to make it better for other people. Over the weeks and months, I have been praying about it and feel God is leading me to work on this project and we are getting close to its debut.
I chose the name "Crossroads" because Travis' name actually means From the Crossroads. That meaning had so much significance to me since the day he was born, that I felt it was extremely fitting for a magazine. My vision is that this magazine will help people find the right path for their own families, as well as provide an environment where our lives and life experiences can intersect.
We have decided to debut the first issue at The Family Cafe, which is an event held here in Orlando where families come from all over the state to participate in trainings, seminars and other events. We have reserved a booth space and will be passing out magazines to the 7500 people in attendance. Here's the best part: The event is being held June 18-21, 2010. How fitting that, the day we get to launch the magazine, is Travis' birthday (June 19). It was an opportunity we could not pass up.
So, I'm in the mode of putting that first issue together, as well as trying to promote it to parents to reserve subscriptions and soliciting advertising to pay for the printing. God has been opening up a lot of doors, and I'm confident he will continue to pave the way for us to bring this idea to fruition. Since I've already written too much in this blog post, I invite you to check out the magazine's website at www.floridacrossroadsonline.com to read more about the inspiration and see what we've been up to. (PS - I need to take this opportunity to thank my brother-in-law Bill for all of the help he's given us. He helped create the webpage and has been volunteering as the official Web Master. He's done an outstanding job, and I am thankful for his willingness to help, as well as Jen's willingness to let him help us.)
If I could, I would like to use this blog to ask for your help and support with the Florida Crossroads Magazine project. If you would like to be a part of it, you can help in several ways:
1.) PRAY, PRAY, PRAY! I'm asking for God's direction and that he would reveal His plan in His timing.
2.) Share it with others. Help me start promoting the magazine to families you may know who would have special interest in a magazine like this. They can go to the website and sign up for a subscription, and go to the Facebook page and become a fan (there's a box at the top of this blog). It's not limited to special needs families, either. Anyone can read and appreciate this magazine. The majority of copy will be geared for this audience, however there will be one specific section called "Moral Support" where as a friend, family member, professional etc. you can learn how to better support the families you know. I'm also hoping to accomplish the goal of "inclusion" by using this magazine as a way for typical families, and professionals who work with special needs kids, to have a better understanding of what life is like for our families and a glimpse into our world.
3.) Think about people you may know who would be interested in advertising. This is the area that I am excited to see God work the most. I am a horrible salesperson, and no doubt my passion for this project lies in generating copy and creating the design and look of the magazine. However, if we don't have advertisers we will not be able to pay for the production. So, I am relying on God to send us people who would like to advertise. This is a state publication, so if you know anyone in businesses that have state or even national appeal, please pass along the lead. Some ideas include: hospitals, banks, theme parks, grocery stores, pharmacies, medical supply, non-profits and organizations, etc...
We have been doing a Bible Study in Sunday School called Experiencing God. The study is about looking around you for ways God is working, hearing his invitaiton to join him and then choosing to join him. I truly feel this is my "Experiencing God" moment. The more I pray, and read His Word, the more I am convinced. The Experiencing God book is filled with amazing examples of how God provided resources or answered huge prayers to people who were truly seeking His will. The same is true for Florida Crossroads Magazine. I am continually drawn to a verse in Ephesians that gives me the faith that this magazine is going to happen.
"Now to him who is able to do immeasureably more than all we ask or imagine, according to his power that is at work in us, to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen." Ephesians 3:20.
Wow, what a powerful verse. It's so easy to put a limit on what God can do. This verse just reminds us that we need to be a blank canvas for God to paint his masterpiece on. I am praying that I remain open, and willing, to do what he says. The results will be nothing short of miraculous--immeasureably more than I could ask or imagine.
As I close this blog, I'm less than 24-hours away from the best part of my birthday...my mother's chocolate cake. She's been making me that cake for the past 34 years, and I surely hope this year is no exception. Let me also say, my mom is amazing. Among other things, she's talented, dependable, compassionate and empathetic. I have long admired her love for her family and really hope I can be there for my kids the way she has been there for me. Sometimes I forget to tell her how much I appreciate her. So, mom, thanks!
Thanks to you, also, for following along with this novella. I don't know why I write so much. I guess sometimes I just have a lot to say. Stay with me, if you can. I hope to keep you updated on the magazine and everything else that's happening around this zoo. Until next time.
Christy
Tuesday, April 20, 2010
Wednesday, March 31, 2010
Miracles and More
Our church recently started a Bible Study called "Experiencing God." The main idea of the study is that you need to stop what you are doing, look to see where God is working, and then join him in that work. The blessings that have come from doing this study have been amazing. I've learned things about God that I never knew before, and I've been given the opportunity to witness some real-life miracles.
Everyone knows the struggle we have faced with Travis' feeding issues. Just in case you don't know, he does not eat solid food and takes his nutrition from Pediasure through a bottle. We have jokingly called it "manna from heaven," but it is the truth. There is no other explanation for how that has sustained him these past 4-1/2 years other than by God's provision. We have spent a lot of time and money on oral-motor therapy and have always ended up feeling frustated and tired. I even decided to take some time off from therapy for a while, because I felt we just needed a break.
About a month ago, we found a new therapist and started again. We were given the same exercises, and I thought "oh no, here we go again." This time, however, it seems to be God's timing because Travis claimed a breakthrough last weekend that was nothing short of a miracle. He learned how to swallow! What I mean is, he usually will put a cracker or something in his mouth, roll it around a bit and then spit it out. Last weekend we had went to visit Memaw and Grandaddy and were sitting around their dining room table eating pizza. We just started talking to Travis about how you have to swallow your food and were trying to show him how to do it by really exaggerating how we were swallowing. My dad told him to "gulp" and then swallow. We were all shocked when Travis did just that...he gulped, and then swallowed! He stuck out his tounge and all the crumbs were gone! I cannot explain to you what a big deal this is, but trust me it is HUGE!
Now, I like the new therapist and I think she is very knowledgeable, but I am afraid I cannot give her the credit for this. God deserves all the credit! Since Saturday, Travis continues to eat animal crackers, goldfish and ritz crackers by chewing and swallowing. We are not pushing him to other foods just yet, but letting him build confidence and be comfortable with these first. The other will come. Did I mention this is a big deal?
I do think that one thing that helped make the timing right is the Sensory Therapy we have been doing since last summer. Travis loves his therapist, Ms. Lauren, and she has been so sweet with him. She has really educated me on this whole topic of sensory processing disorder and I think we all are coming to understand it a little better. Some of the things we have worked on is motor planning and muscle work. She has him do different things like obstacle courses, climbing over bean bags, ball pits and other stuff. It has really helped him and he seems to be better coordinated and easier in figuring out what he need to do to accomplish physical tasks, like climbing. I really think this has helped him get a little better control over his tounge and mouth muscles, too. Whatever the case, to God be the Glory!
The other big answer to prayer has come with the decision about what to do for school next year. I think we have found out that Travis will be able to attend UCP next year for kindergarten. I am very excited, and pleased with that choice and think it will be good for both of us. He will be able to get some independence and I will learn how to let him have it. We actually are scheduled to go tomorrow for the Student Study Team Meeting and development of the IEP. I am confident it will be a good meeting and we will be well-prepared for next year.
You know, I've realized the last few posts I have created I didn't really talk about Emily. Last week, I actually won the "family name game" on Z88.3 and I got to talk about Emily on the radio. My only problem was I had too much to say! Maybe I will say here, what I wish I had the time to say then. Emily is amazing. She truly is everything I wish I could be. She's super smart, and funny. She's silly and energetic. She's compassionate and loving. She preferrs to have your undivided attention, but will make do playing by herself if you aren't available. She is the most outgoing 2-year-old I've ever seen and isn't afraid to go up to people and say hello. You'll never believe this, but I think she'll probably be a vet when she grows up. She loves every animal, especially puppies and kitty-cats. Heaven help me. She tries to be so helpful with Travis, and she is in so many ways. She is truly a blessing.
We truly have a lot to be thankful for. Never lose sight of that!
Psalm 136:2
Give thanks to the God of gods; His love endures forever.
Everyone knows the struggle we have faced with Travis' feeding issues. Just in case you don't know, he does not eat solid food and takes his nutrition from Pediasure through a bottle. We have jokingly called it "manna from heaven," but it is the truth. There is no other explanation for how that has sustained him these past 4-1/2 years other than by God's provision. We have spent a lot of time and money on oral-motor therapy and have always ended up feeling frustated and tired. I even decided to take some time off from therapy for a while, because I felt we just needed a break.
About a month ago, we found a new therapist and started again. We were given the same exercises, and I thought "oh no, here we go again." This time, however, it seems to be God's timing because Travis claimed a breakthrough last weekend that was nothing short of a miracle. He learned how to swallow! What I mean is, he usually will put a cracker or something in his mouth, roll it around a bit and then spit it out. Last weekend we had went to visit Memaw and Grandaddy and were sitting around their dining room table eating pizza. We just started talking to Travis about how you have to swallow your food and were trying to show him how to do it by really exaggerating how we were swallowing. My dad told him to "gulp" and then swallow. We were all shocked when Travis did just that...he gulped, and then swallowed! He stuck out his tounge and all the crumbs were gone! I cannot explain to you what a big deal this is, but trust me it is HUGE!
Now, I like the new therapist and I think she is very knowledgeable, but I am afraid I cannot give her the credit for this. God deserves all the credit! Since Saturday, Travis continues to eat animal crackers, goldfish and ritz crackers by chewing and swallowing. We are not pushing him to other foods just yet, but letting him build confidence and be comfortable with these first. The other will come. Did I mention this is a big deal?
I do think that one thing that helped make the timing right is the Sensory Therapy we have been doing since last summer. Travis loves his therapist, Ms. Lauren, and she has been so sweet with him. She has really educated me on this whole topic of sensory processing disorder and I think we all are coming to understand it a little better. Some of the things we have worked on is motor planning and muscle work. She has him do different things like obstacle courses, climbing over bean bags, ball pits and other stuff. It has really helped him and he seems to be better coordinated and easier in figuring out what he need to do to accomplish physical tasks, like climbing. I really think this has helped him get a little better control over his tounge and mouth muscles, too. Whatever the case, to God be the Glory!
The other big answer to prayer has come with the decision about what to do for school next year. I think we have found out that Travis will be able to attend UCP next year for kindergarten. I am very excited, and pleased with that choice and think it will be good for both of us. He will be able to get some independence and I will learn how to let him have it. We actually are scheduled to go tomorrow for the Student Study Team Meeting and development of the IEP. I am confident it will be a good meeting and we will be well-prepared for next year.
You know, I've realized the last few posts I have created I didn't really talk about Emily. Last week, I actually won the "family name game" on Z88.3 and I got to talk about Emily on the radio. My only problem was I had too much to say! Maybe I will say here, what I wish I had the time to say then. Emily is amazing. She truly is everything I wish I could be. She's super smart, and funny. She's silly and energetic. She's compassionate and loving. She preferrs to have your undivided attention, but will make do playing by herself if you aren't available. She is the most outgoing 2-year-old I've ever seen and isn't afraid to go up to people and say hello. You'll never believe this, but I think she'll probably be a vet when she grows up. She loves every animal, especially puppies and kitty-cats. Heaven help me. She tries to be so helpful with Travis, and she is in so many ways. She is truly a blessing.
We truly have a lot to be thankful for. Never lose sight of that!
Psalm 136:2
Give thanks to the God of gods; His love endures forever.
Tuesday, January 26, 2010
Ready to Go
This morning, I'm waking up with that giddy feeling I get when God starts to reveal a part of His plan to me. It is humbling and I am always stunned when it happens. We serve a mighty God!
In my last post, I ranted about the injustices for special needs children, specifically when it comes to school-related issues. I've calmed down a bit, though I do think it still is an "un-fair" process. I think I've calmed down because God is revealing to me a way to turn my experience into something for the greater good. Here's what I'm discovered.
Last Thursday, I took Travis to school for what was to be the completion of his school psychological exam for kindergarten. The first day had went so well, that I was expecting Thursday to be the same. Unfortunately, it wasn't. Travis was having an "off" day and did not want to focus or answer their questions. He changed the subject on questions he knew the answer to and just seem disengaged and inattentive.
I'm not sure why. He had gotten up the night before, so maybe he wasn't feeling his best. Then again, this was the third day in the same room, sitting in the same chair, answering what seemed like the same questions. Maybe he was just over it. Whatever it was, the evaluators felt it best to stop and start again later. He had done such a good job on Tuesday, they knew what he was capable of, and I'm thankful for a second chance.
I of course left the room with a pit in my stomach. What I had feared the most had happened. A poor evaluation would mean what, now? I got in my car and cried, screamed and asked that all-to-familiar question, Why? It's not fair, I told God, no one can see what an amazing child Travis is. Why does he have to go through this? Why, why, why? God let me get it off my chest, and I can just imagine him sitting in heaven listening patiently and saying "are you done, yet?" It must have felt to him a lot like it feels to me when Emily runs around the house crying for no apparent reason. Thank goodness He is patient with me.
For those of you who are my friend on Facebook, you saw my post last week that said "I'm expecting another answer to prayer." I did get an answer to prayer, just not the answer I was expecting. I just knew last Thursday God was going to give Travis an awesome evaluation, a clear mind and a willing attitude. He didn't. I came home and cried to my mom, who called my dad, who called me. Most everyone who reads this post has met my mom and dad, and you know how special they are. True to form, they saved my day. They knew just what to say, and when and how to say it.
It was after talking with my dad that God starting revealing a bigger picture plan. I'm saving the details, but it turns out dad and I had been dealing with the same "I hear God speaking" message for the past few weeks. When we started talking, we were amazed at how God had been revealing a plan, to both of us independently. It all started to make sense to me.
I was crying and asking "why me?" and the answer was, "so you can help other people." I started to understand that what was happening with Travis was most definitely for a purpose. Had he breezed through this evaluation, I would have gone on and not looked back. Because he didn't, I was given an opportunity to slow-down and see what really matters. In the big picture, I know that Travis is smart, he's amazing and he has unlimited potential. I do not need a test to tell me that. I also know that I am ready and willing to take responsibility of his education in my own hands, whether that means homeschooling or what-have-you. So, ultimately the school evaluation, that I had placed on a pedestal, doesn't mean much. As I've said a lot lately, these God does not give us these types of experiences to punish us, but rather prepare us for what's next.
My mission now is to communicate these experiences to other people dealing with the same issues. Providing encouragement, promoting awareness, pushing the positive side of these situations is what I should be doing. Wow. In 24 hours that poor, woe-is-me attitude had been replaced with thank you for allowing me this opportunity.
As I said, I'm saving the details of the specific project I believe God is calling me to work on. I will share it when the time is right. For now, I ask for your help by praying for wisdom, creativity and resources. I also ask that you help me "get the word out" to other parents struggling with issues like mine. Please feel free to forward this blog to anyone you think might care, and suggest they start following me. I'm hoping to start making more regular posts as work towards the mission gets underway. I'll also be communicating through Facebook and twitter when it makes sense, so find me as a friend and follow me @JustChristy.
I know that this specific verse in Esther 4:14 was written for Esther as she contemplated helping her people.
"For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father's family will perish. And who knows but that you have come to royal position for such a time as this?"
I can identify with her angst. I know she was facing what she felt was an impossible situation. And, I'm sure that when Mordecai spoke these words to her, she found herself filled with determination and confidence--a new purpose for her life. Marveling at the plan God had put in place, Esther did what was called of her. She realized the responsibility of being placed in a position of power "for such a time as this."
I feel the same way. My experiences, the talented people I have been blessed to meet, the high-points and the low-points of this journey have all combined for such a time as this. Now, I pray I will only be as bold as Esther and take action towards what I feel God is calling me to do.
Travis will try again with the evaluation this morning. However it goes, today I'm grounded with the realization that it is all a part of God's plan.
In humble service,
Christy
In my last post, I ranted about the injustices for special needs children, specifically when it comes to school-related issues. I've calmed down a bit, though I do think it still is an "un-fair" process. I think I've calmed down because God is revealing to me a way to turn my experience into something for the greater good. Here's what I'm discovered.
Last Thursday, I took Travis to school for what was to be the completion of his school psychological exam for kindergarten. The first day had went so well, that I was expecting Thursday to be the same. Unfortunately, it wasn't. Travis was having an "off" day and did not want to focus or answer their questions. He changed the subject on questions he knew the answer to and just seem disengaged and inattentive.
I'm not sure why. He had gotten up the night before, so maybe he wasn't feeling his best. Then again, this was the third day in the same room, sitting in the same chair, answering what seemed like the same questions. Maybe he was just over it. Whatever it was, the evaluators felt it best to stop and start again later. He had done such a good job on Tuesday, they knew what he was capable of, and I'm thankful for a second chance.
I of course left the room with a pit in my stomach. What I had feared the most had happened. A poor evaluation would mean what, now? I got in my car and cried, screamed and asked that all-to-familiar question, Why? It's not fair, I told God, no one can see what an amazing child Travis is. Why does he have to go through this? Why, why, why? God let me get it off my chest, and I can just imagine him sitting in heaven listening patiently and saying "are you done, yet?" It must have felt to him a lot like it feels to me when Emily runs around the house crying for no apparent reason. Thank goodness He is patient with me.
For those of you who are my friend on Facebook, you saw my post last week that said "I'm expecting another answer to prayer." I did get an answer to prayer, just not the answer I was expecting. I just knew last Thursday God was going to give Travis an awesome evaluation, a clear mind and a willing attitude. He didn't. I came home and cried to my mom, who called my dad, who called me. Most everyone who reads this post has met my mom and dad, and you know how special they are. True to form, they saved my day. They knew just what to say, and when and how to say it.
It was after talking with my dad that God starting revealing a bigger picture plan. I'm saving the details, but it turns out dad and I had been dealing with the same "I hear God speaking" message for the past few weeks. When we started talking, we were amazed at how God had been revealing a plan, to both of us independently. It all started to make sense to me.
I was crying and asking "why me?" and the answer was, "so you can help other people." I started to understand that what was happening with Travis was most definitely for a purpose. Had he breezed through this evaluation, I would have gone on and not looked back. Because he didn't, I was given an opportunity to slow-down and see what really matters. In the big picture, I know that Travis is smart, he's amazing and he has unlimited potential. I do not need a test to tell me that. I also know that I am ready and willing to take responsibility of his education in my own hands, whether that means homeschooling or what-have-you. So, ultimately the school evaluation, that I had placed on a pedestal, doesn't mean much. As I've said a lot lately, these God does not give us these types of experiences to punish us, but rather prepare us for what's next.
My mission now is to communicate these experiences to other people dealing with the same issues. Providing encouragement, promoting awareness, pushing the positive side of these situations is what I should be doing. Wow. In 24 hours that poor, woe-is-me attitude had been replaced with thank you for allowing me this opportunity.
As I said, I'm saving the details of the specific project I believe God is calling me to work on. I will share it when the time is right. For now, I ask for your help by praying for wisdom, creativity and resources. I also ask that you help me "get the word out" to other parents struggling with issues like mine. Please feel free to forward this blog to anyone you think might care, and suggest they start following me. I'm hoping to start making more regular posts as work towards the mission gets underway. I'll also be communicating through Facebook and twitter when it makes sense, so find me as a friend and follow me @JustChristy.
I know that this specific verse in Esther 4:14 was written for Esther as she contemplated helping her people.
"For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father's family will perish. And who knows but that you have come to royal position for such a time as this?"
I can identify with her angst. I know she was facing what she felt was an impossible situation. And, I'm sure that when Mordecai spoke these words to her, she found herself filled with determination and confidence--a new purpose for her life. Marveling at the plan God had put in place, Esther did what was called of her. She realized the responsibility of being placed in a position of power "for such a time as this."
I feel the same way. My experiences, the talented people I have been blessed to meet, the high-points and the low-points of this journey have all combined for such a time as this. Now, I pray I will only be as bold as Esther and take action towards what I feel God is calling me to do.
Travis will try again with the evaluation this morning. However it goes, today I'm grounded with the realization that it is all a part of God's plan.
In humble service,
Christy
Wednesday, January 20, 2010
Tried and Tested
Travis is smack-dab in the middle of all the school evaluations for his transition to kindergarten next year. Yes, hard to believe, but he will turn 5 in June and will be kindergarten age this fall. If only it were as easy as packing his backpack and sending him to school, like it is for nearly every other child in Florida. But, alas, just one more injustice for a child with disabilities.
For all of my friends who have beautiful, healthy children, please do not take this the wrong way, but you've got it pretty easy when it comes to school transitions. You're never questioned about your child's aptitude or ability to learn. It's a given. You sign them up and send them on. For those of us who have a child with a disability, the process is 180 degrees different.
It starts when your child turns 3 and has to undergo a battery of tests that judge their cognitive abilities, social skills, self-help strengths (or weaknesses), physical accomplishments and more. After you've went through all of that you are treated to a meeting where you and your spouse are outnumbered by about 4-5 people. You get to sit at a table and hear how the "experts" have summed up your child. I use quote-marks when I say experts, because these people do have a degree, but they only spend about an hour with your child to weigh-in on some of the most important comments that will ever be made about them. Your child's educational future is held in their hands, and honestly, they would rather you not share your input. You, the person who has been by your child's side 24/7 since the moment they were born. Forget all the days and nights spent by their side in a hospital bed. Disregard the painstaking hours you've spent in instruction from therapists, teachers, articles and research. Dare not speak of all the amazing things you've witnessed your child accomplish, because after all, you are the mother and you are biased as to what your child can and can not do.
After that reality check, you get the chance to attend yet another meeting where you are graciously offered services to "help" your child in their pursuit of education. In our case, when Travis turned three, we were extremely lucky. A whole 30min a week for PT, 30min a week for OT and an hour for speech. Wow. Though it is written in a document that is called an "Individualized Education Plan" (IEP for short) it is hardly individual. Yes, the goals on the paper are individual, but they have to be accomplished in a group setting. Ask for a one-on-one therapy session and you would think you had committed a crime. It just doesn't happen.
We were fortunate that we found UCP, a charter school, that could better meet Travis' needs. They were able to offer us smaller class sizes, which would hopefully be safer, and could give him individual therapy time. It was not necessarily the ideal place, but a million times better than the public school option. The school's assistance was a good place to start, but we continue to take Travis to private therapists and programs because we are committed to giving him every opportunity we can.
When Travis entered UCP in August 2008, he could barely walk or talk. I was so nervous about sending him to "school" that I camped outside of his classroom door every day to make sure he was okay. He actually did great at school, and gave me the chance to catch a glimpse of what he was really capable of. He adapted well, and eventually I did too, and we went about our lives choosing not to think about the day when he turned 5 and we had to start it all over again.
But, here it is. All too soon, if you ask me. The process has started again. I've been stressing out for the past two months about the evaluations and have lost sleep wondering if the evaluators will truly see Travis for who he is, and the potential he has. For those of you who read my Facebook post Tuesday, you know that phase one went rather well. The school psychologst and speech therapist started the battery of tests and spent an hour rapid-firing him with questions and commands. I was there in the corner, quietly praying, and totally amazed at my miracle. He answered their questions, and I think they were actually surprised with how well he did. I laughed because last time he was tested, he could not talk. In fact, the last eval report said he was not able to identify colors because he was not able to say their names. This time, he was able to speak easily and tell that same psychologist who told him he didn't know his colors, that the picture she was showing him was "a red airplane with an orange propeller" when all they really wanted him to say was plane.
Today he was evluated for Physical and Occupational therapy. He was scheduled for that at 10:30, and at 9:00 I got a call that they'd like to assses his vision before the PT/OT eval, and they just wanted me to know. How kind. I scampered around and got there at 10:00 so I could be a part of the "vision" assessment, only to find out they were not ready to assess him. He ended up doing his PT first, and then they kind of worked it in with the OT eval. By the time it was over he was tired, frustrated and ready to go. I was too. He actually did do well, considering all that was asked of him. I just think it was unfair to put him through so much scrutiny in such a short amount of time.
Tomorrow he will try to finish up the psychology evaluation. PLEASE, PLEASE pray for his endurance and clarity of mind. Travis' vision impairment makes intense vision work (like these evaluations that rely heavily on looking at pictures and matching things and such) very hard, and it can be physically draining. He basically sits in a chair for an hour with maybe a 5 min. break (still sitting in the chair) where he can play with a toy at the desk. I am praying that he will do as well tomorrow as he did Tuesday and finish up this round of testing on a high-note.
Why am I writing about all of this? Because 1. I need to vent. 2. I need your support and 3. I think there is a bigger issue here that needs to be addressed. That bigger issue is the unfairness and injustice that people with disabilities have to face every day of their lives. It is a constant battle to "prove" their abilities and seek to be accepted by people that would rather not take notice. These kids have to jump through hoops and play these games just to have the same access to education that everyone else has. And, for what, is what I want to know. I am fully aware that my child is not "typical." My doctors have diagnosed the issues and put it on the record. My insurance company would be able to provide you with pounds of paper that shows he needs therapy, receives therapy and benefits from therapy. So why do I have to prove it to the school board?
I guess the answer to that is, they are not testing to see if he has a diability, they are testing to see whether he deserves the right to sit in the same classroom with other children who don't have a disability. I guess it's the school's version of survival of the fittest. A chance to get rid of the dead weight so typical children will be free to learn in the most productive environment possible.
It's injust, but that's the way it is. Take it or leave it.
In all honesty, I'm probably going to leave it. I'm about 99% sure that I will be homsechooling Travis next year. That decision is for several reasons, but at the top of the list, I do not trust the public school system with my child's education. And, I'm not just saying that because I have a child with a disability. If Travis was a non-disabled child, I think I would feel the same way. You cannot convince me that a state that will allocate billions of dollars to buy railroad track in Central Florida for a commuter rail system, rather than giving an extra dime to education, has it's priorities in the right place. No wonder unemployment is in double digits and 12-year-olds are robbing convenience stores.
The only reason why I am still playing the game with these evaluations is because I would desparately like to have access to the funding that comes along with enrolling my child in school. So far, I have not been impressed with the level of quality associated with school therapy, but it's better than nothing. And, when you are working on a limited number of insurance covered visits, and a budget that has to sustain a family of four, sometimes you have to take what you can get.
Okay, so what's next. I am actually considering a few things, and I'm asking for everyone's support, prayer and feedback. I believe God has been speaking to me lately, and I'm trying to make sense of it and figure out what He wants me to do. One of the first things I have been mulling over is the idea of creating a real blog about the issue of fairness for children and families with disabilities. By real I mean one that has its own domain name, and that I can create a following around. I will commit myself to regular posts, and try to make them as thoughtful and insightful as I can. The internet has given us all a chance to make our voices heard, and I'm feeling it is time to turn up the volume on mine. When the time comes, I'd like to ask for your help in sharing my posts with others and building a community (encompassing all levels of ability) that relates, understands and accepts people of all levels. The number of children in this country with disabilities is growing at an exponential rate, and sooner or later we will all have to face the issue head-on. If God chooses to give me an opportunity to be a voice calling in the dessert, than so be it. I pray I will be of service in spreading the message that He created man in his image, and that means everyone.
I'm also considering legislative action to create new options for families of children with disabilities. For example, I'd really love to see the McKay scholarship amended to allow homeschoolers to use their scholarship money for private therapies. Again, when the time comes, I'd like to ask all of you for support and encouragement.
As always, thank you for listening to my ramblings. I want to end this entry by just reiterating how proud I am of Travis. He is totally oblivious to the politics and frustrations behind this process. Thank God for the innocense of a child.
My mother, who has empathized with me at every moment of this process, gave me a page from her devotional today that ironically was about a mother who was worried her child had a learning disability. The mom had the same fears I do, and shared the same disappointments. The answer, for her, was found in scripture. I think I can find it there to. Here's what it said:
"You will keep in perfect peace the mind that is dependent on You, for it is trusting in You." Isaiah 26:3. Leave it to God to know the exact right thing to say.
On my knees,
Christy
For all of my friends who have beautiful, healthy children, please do not take this the wrong way, but you've got it pretty easy when it comes to school transitions. You're never questioned about your child's aptitude or ability to learn. It's a given. You sign them up and send them on. For those of us who have a child with a disability, the process is 180 degrees different.
It starts when your child turns 3 and has to undergo a battery of tests that judge their cognitive abilities, social skills, self-help strengths (or weaknesses), physical accomplishments and more. After you've went through all of that you are treated to a meeting where you and your spouse are outnumbered by about 4-5 people. You get to sit at a table and hear how the "experts" have summed up your child. I use quote-marks when I say experts, because these people do have a degree, but they only spend about an hour with your child to weigh-in on some of the most important comments that will ever be made about them. Your child's educational future is held in their hands, and honestly, they would rather you not share your input. You, the person who has been by your child's side 24/7 since the moment they were born. Forget all the days and nights spent by their side in a hospital bed. Disregard the painstaking hours you've spent in instruction from therapists, teachers, articles and research. Dare not speak of all the amazing things you've witnessed your child accomplish, because after all, you are the mother and you are biased as to what your child can and can not do.
After that reality check, you get the chance to attend yet another meeting where you are graciously offered services to "help" your child in their pursuit of education. In our case, when Travis turned three, we were extremely lucky. A whole 30min a week for PT, 30min a week for OT and an hour for speech. Wow. Though it is written in a document that is called an "Individualized Education Plan" (IEP for short) it is hardly individual. Yes, the goals on the paper are individual, but they have to be accomplished in a group setting. Ask for a one-on-one therapy session and you would think you had committed a crime. It just doesn't happen.
We were fortunate that we found UCP, a charter school, that could better meet Travis' needs. They were able to offer us smaller class sizes, which would hopefully be safer, and could give him individual therapy time. It was not necessarily the ideal place, but a million times better than the public school option. The school's assistance was a good place to start, but we continue to take Travis to private therapists and programs because we are committed to giving him every opportunity we can.
When Travis entered UCP in August 2008, he could barely walk or talk. I was so nervous about sending him to "school" that I camped outside of his classroom door every day to make sure he was okay. He actually did great at school, and gave me the chance to catch a glimpse of what he was really capable of. He adapted well, and eventually I did too, and we went about our lives choosing not to think about the day when he turned 5 and we had to start it all over again.
But, here it is. All too soon, if you ask me. The process has started again. I've been stressing out for the past two months about the evaluations and have lost sleep wondering if the evaluators will truly see Travis for who he is, and the potential he has. For those of you who read my Facebook post Tuesday, you know that phase one went rather well. The school psychologst and speech therapist started the battery of tests and spent an hour rapid-firing him with questions and commands. I was there in the corner, quietly praying, and totally amazed at my miracle. He answered their questions, and I think they were actually surprised with how well he did. I laughed because last time he was tested, he could not talk. In fact, the last eval report said he was not able to identify colors because he was not able to say their names. This time, he was able to speak easily and tell that same psychologist who told him he didn't know his colors, that the picture she was showing him was "a red airplane with an orange propeller" when all they really wanted him to say was plane.
Today he was evluated for Physical and Occupational therapy. He was scheduled for that at 10:30, and at 9:00 I got a call that they'd like to assses his vision before the PT/OT eval, and they just wanted me to know. How kind. I scampered around and got there at 10:00 so I could be a part of the "vision" assessment, only to find out they were not ready to assess him. He ended up doing his PT first, and then they kind of worked it in with the OT eval. By the time it was over he was tired, frustrated and ready to go. I was too. He actually did do well, considering all that was asked of him. I just think it was unfair to put him through so much scrutiny in such a short amount of time.
Tomorrow he will try to finish up the psychology evaluation. PLEASE, PLEASE pray for his endurance and clarity of mind. Travis' vision impairment makes intense vision work (like these evaluations that rely heavily on looking at pictures and matching things and such) very hard, and it can be physically draining. He basically sits in a chair for an hour with maybe a 5 min. break (still sitting in the chair) where he can play with a toy at the desk. I am praying that he will do as well tomorrow as he did Tuesday and finish up this round of testing on a high-note.
Why am I writing about all of this? Because 1. I need to vent. 2. I need your support and 3. I think there is a bigger issue here that needs to be addressed. That bigger issue is the unfairness and injustice that people with disabilities have to face every day of their lives. It is a constant battle to "prove" their abilities and seek to be accepted by people that would rather not take notice. These kids have to jump through hoops and play these games just to have the same access to education that everyone else has. And, for what, is what I want to know. I am fully aware that my child is not "typical." My doctors have diagnosed the issues and put it on the record. My insurance company would be able to provide you with pounds of paper that shows he needs therapy, receives therapy and benefits from therapy. So why do I have to prove it to the school board?
I guess the answer to that is, they are not testing to see if he has a diability, they are testing to see whether he deserves the right to sit in the same classroom with other children who don't have a disability. I guess it's the school's version of survival of the fittest. A chance to get rid of the dead weight so typical children will be free to learn in the most productive environment possible.
It's injust, but that's the way it is. Take it or leave it.
In all honesty, I'm probably going to leave it. I'm about 99% sure that I will be homsechooling Travis next year. That decision is for several reasons, but at the top of the list, I do not trust the public school system with my child's education. And, I'm not just saying that because I have a child with a disability. If Travis was a non-disabled child, I think I would feel the same way. You cannot convince me that a state that will allocate billions of dollars to buy railroad track in Central Florida for a commuter rail system, rather than giving an extra dime to education, has it's priorities in the right place. No wonder unemployment is in double digits and 12-year-olds are robbing convenience stores.
The only reason why I am still playing the game with these evaluations is because I would desparately like to have access to the funding that comes along with enrolling my child in school. So far, I have not been impressed with the level of quality associated with school therapy, but it's better than nothing. And, when you are working on a limited number of insurance covered visits, and a budget that has to sustain a family of four, sometimes you have to take what you can get.
Okay, so what's next. I am actually considering a few things, and I'm asking for everyone's support, prayer and feedback. I believe God has been speaking to me lately, and I'm trying to make sense of it and figure out what He wants me to do. One of the first things I have been mulling over is the idea of creating a real blog about the issue of fairness for children and families with disabilities. By real I mean one that has its own domain name, and that I can create a following around. I will commit myself to regular posts, and try to make them as thoughtful and insightful as I can. The internet has given us all a chance to make our voices heard, and I'm feeling it is time to turn up the volume on mine. When the time comes, I'd like to ask for your help in sharing my posts with others and building a community (encompassing all levels of ability) that relates, understands and accepts people of all levels. The number of children in this country with disabilities is growing at an exponential rate, and sooner or later we will all have to face the issue head-on. If God chooses to give me an opportunity to be a voice calling in the dessert, than so be it. I pray I will be of service in spreading the message that He created man in his image, and that means everyone.
I'm also considering legislative action to create new options for families of children with disabilities. For example, I'd really love to see the McKay scholarship amended to allow homeschoolers to use their scholarship money for private therapies. Again, when the time comes, I'd like to ask all of you for support and encouragement.
As always, thank you for listening to my ramblings. I want to end this entry by just reiterating how proud I am of Travis. He is totally oblivious to the politics and frustrations behind this process. Thank God for the innocense of a child.
My mother, who has empathized with me at every moment of this process, gave me a page from her devotional today that ironically was about a mother who was worried her child had a learning disability. The mom had the same fears I do, and shared the same disappointments. The answer, for her, was found in scripture. I think I can find it there to. Here's what it said:
"You will keep in perfect peace the mind that is dependent on You, for it is trusting in You." Isaiah 26:3. Leave it to God to know the exact right thing to say.
On my knees,
Christy
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