Tuesday, August 12, 2014

Not Ready

I sat out on my deck this evening and watched a group of kids practicing baseball on one side of the park and football on the other. My garden is full of tomatoes, squash, lettuce, spinach, green beans, and strawberries and the apples on my tree are beginning to turn red. Our fire pit has roasted more bags of marshmallows than I can count and bears the remains of melted chocolate from the making of s'mores. We have had a great summer and have done many fun things along with just plain doing nothing. However tonight, I couldn't help but notice the sun fall below the horizon a bit earlier and felt a breeze that was cooler than nights before. For me, it was a final realization that summer is almost over again and school starts in less than a week. I am not ready. I am really, really, not ready.



In years past, the start of a new school year was new and exciting. It meant a new classroom, teacher, and friends. It was an another opportunity to watch my kids grow and learn new things. It was looking forward to class parties and field trips. It was fun. However, this year all I can think about is how hard I am going to fight once again. I wonder if I will be heard. I wonder if the staff will be trained any more than they were last year. I wonder if they will kick me out of my child's school for trying to advocate for her. I wonder how many lies I will get to try to disprove. I wonder if my daughter will ever have team who will understand how to provide her the services she has the legal right to have and if she will ever get to show her teachers and friends how smart and amazing she really is. I wonder if this year I will finally get my day in court. I am frustrated and angry and we haven't even made it to the first day.

In preparation for this dreaded first day of school I took the kids to Target for school supplies. Makenzie was so excited and picked out a sparkly Minnie Mouse back pack. Inside I placed supplies that Makenzie also chose including a pink pencil box, pink ruler, crayons, markers, glue, notebooks, and a binder. She is so proud of that backpack and is beyond excited to show it to everyone that comes over. She is just like any other little girl. However, on the first day of school the educators will not give her the chance to be like any other little girl.



This year Makenzie will be going into second grade. This will be her 7th year in school and she will have her 8th ILC teacher who will need "time" to get to know her and upon first glace see a very broken little girl and not assume competence.

Makenzie will arrive at school and they will escort her into a contained classroom and try to figure out what chair they will put her in. They will struggle to mount her talker and then maybe they will bring her into the classroom. When she enters the classroom everyone will look up and stare at her. She will then receive her very own awkward introduction and the aide will have no clue how to help her use her talker so she will not get to respond. Even if the aide does know how to use the talker she will have been instructed to only use the yes/no page because apparently Makenzie is incapable of using the rest of her talker and they have reserved that only for speech therapy and contained classroom time. The teacher will not know how to facilitate conversation between Makenzie and her peers and any questions asked will not be closed questions that she can actually answer. Someone may or may not come in and explain to the class about all of the reasons Makenzie is different while trying miserably to highlight the ways that she is the same and then the Makenzie show will be over and the day will move on.



The aide will have no clue what is going on in the classroom because no one will have planned Makenzie's day. Shortly after, most likely in the middle of an activity, Makenzie will be removed from the classroom and brought back into the contained classroom. Once there, they will proceed to try to get to know Makenzie by singing dumb songs, asking her 20 yes/no questions, and reading her preschool books that contain nothing of interest to her. She will be completely disengaged, she will not participate, she will look at the floor, and they will make negative ticks on their excel spreadsheet in efforts to prove that my daughter is too retarded to be learning in the second grade classroom or that the switch she has had for over 7 years needs to be readdressed again.



Once the bulk of the education in the classroom is over and it is time for lunch and recess Makenzie will be reunited with her peers. She will sit next to the same aide that doesn't know how to use her talker nor how to facilitate purposeful interactions. She will sit in silence and watch everyone eat before being walked out to the playground because the staff is not yet ready to learn how to use her power chair. At recess the staff will not take her out of her chair, and the adapted swing that I have been requesting from the district for the last 3 years will not be there. So, due to a lack of training and unwillingness Makenzie will take a walk with her aide. More than likely she will attract a following of children who will have a ton of questions. However, the untrained aide will have most likely taken Makenzie's talker down and she will not be able to answer any questions. The aide will try to answer the questions for her but will not know the answer to most of them. Recess will be over and Makenzie will go into a different room that is about the size of a closet and covered with crap from floor to ceiling for speech therapy so they can teach Makenzie how to communicate in the most unnatural environment possible, while the rest of the kids finish reading, writing, and math.



When it is time for specials Makenzie will get to rejoin her classmates with an aide who has no clue once again what is going on in the classroom because of a lack of planning and communication. They will struggle through class before sending her back to the contained classroom for more of the same and then back to 2nd grade for science or social studies once again with no planning and no way for Makenzie to have meaningful participation.

They will then remove Makenzie from the classroom at the end of the day early to pack her up because they have not stored her things with the 2nd grade class but instead in the contained classroom and the special needs bus will leave before the bell even rings.



Over the coarse of the day Makenzie will have been carted in and out of the classroom in front of her peers numerous times. She will not be exposed to much if any 2nd grade curriculum. Non of her services will be pushed into the classroom and the aide will be unaware or untrained on the modifications and adaptations Makenzie needs to successfully meet her individual goals. She will immediately be viewed as a visitor not a member of the classroom. The children will be kind to her but she will not establish a sense of belonging or benefit from all of the positive things that come with the feeling of belonging.

On the first day of school, Makenzie will not be given a chance to be a little girl who is so excited to show her friends the super cool new backpack that she picked out just like everyone else.



The above is not just what I think goes on, it is what I know goes on. I watched it happen day in and day out for two and a half months, and several full days after the nurse started last year. I have spent hours in meetings trying to get the district to see how detrimental this is to Makenzie but they are unphased. They are more concerned with not letting me "dictate" Makenzie's education than they are in accepting that I know my child's needs better then anyone with or without an education degree.

Makenzie's current education plan has not been reviewed in over a year and is completely out of compliance given it was not reviewed on time nor does it contain my signature. This is the IEP that they intend to use on the first day of school which is how I can tell you with much confidence that the above will be how her first day and every day after will go until a federal court tells them differently.

 
 


I do have a few new things up my sleeve for this year which keeps me hopeful but today I am just super sad and angry that the school continues to define and limit an amazingly smart little girl by a body that is broken.



Please pray for my family during this trying time. Please pray that the staff at the school would hear what I am saying and see how smart and amazing Makenzie is. Pray that their hearts would be softened and that they would do what needs to be done without a court battle in order to give her a fighting chance for once. 



Believe.... Prayer Works

Thursday, June 5, 2014

A Much Needed Break!

Summer break....... need I say more? I do not think that I have ever been quite so excited for the school year to end as I am right now!

For me, this school year ended with a bang. I finished another semester with a 4.0 and found out today that I was accepted into the nursing program I applied to. Next semester will be insane and I would be lying if I said I wasn't a bit scared. However, God has an amazing plan for all of my personal experience and I am certain that each and every experience I have had over the last 8 years with a brain injury, a ruptured appendix, pain, hope, joy, and healing, will remind me for the next 3 years why I choose this path for my life. I am super excited!

For Makenzie the school year ended in the same way that it started..... a complete mess. There are way too many ridiculous things I could tell you but in short...I have a team of attorneys...we still have no IEP..... the ILC teacher did not listen to a single thing I had to say, refused to communicate, and completely wasted six months of my daughters life.... the Assistive Technology team spent the whole year writing an evaluation with incomplete information. They concluded on communication access that has been unsuccessful in the educational environment for three years. Even though I presented them with other access options that Makenzie has had amazing success with at home and 32 hours of talker programing, they are stubbornly confident in their evaluation....the aides were never even fully trained on how to properly use Makenzie's talker.... the staff in general failed to keep my daughter safe by not following universal precaution protocol and saw no issue with sending aides to work with my child while they were sick.....and because of the district's lack of concern for my daughters health, she has been sick more since December than she has in 2 years combined........ and the list goes on.

For this year I am done. There will be a new ILC teacher at Makenzie's school next year and I am hoping for a teacher that understands augmentative communication and integration practices. I am hoping for a teacher who is willing to put in the effort necessary to plan for Makenzie instead of just sending her into the classroom with no plan and untrained aides. I am hoping for a teacher who doesn't need to be right all of the time and can suppress professional ego in order to meet Makenzie's needs. I am hoping to get a teacher who is willing to listen and respect my knowledge of Makenzie. I am hoping for a teacher who will take the time to truly understand Makenzie as a little girl instead of a check list of data points, and who is willing to accept help from myself and Makenzie home team.

Over the summer I have a lot to think about and work on in order to get Makenzie to a place where I can go to school without having battle after battle with the school. I have been exploring the district's Home/Hospital model and am thinking that I am going to have a plan set up where Makenzie receives the majority of her education at home while going to school for an hour or so each day to socialize and communicate with her peers. I do not want to do this long term but if I can keep Makenzie out of the crossfire of the political garbage while the school trains the new ILC teacher and aides properly on all of Makenzie's equipment and an appropriate IEP is drawn up, I would be a lot less stressed and Makenzie would be a lot happier and more successful.

I am trying really hard to let go of all of the issues that have come up this year with the school but it is super hard because Makenzie is so smart and deserves so much more than to be underestimated and treated in such a condescending manner. Please pray that over the summer God would soften hearts and open up minds in order for the district to be able to see Makenzie first as a child just like every other child instead of a spreadsheet of data points and evaluation results tied to political BS and federal funding. Pray that the school hires an ILC teacher who can see potential in kids whole can not always prove their skills, and who believes in integration. Pray that next year will be a WHOLE LOT better than this year because I will need a padded room if next year goes the way this year did.

Despite a really tough school year, life is really good. Makenzie and the boys are healthy and happy. At the end of the day that is really all that matters!!! Now it is time to go enjoy a much needed summer break!

Believe... Prayer Works

Monday, March 31, 2014

Picture and Video Overload

Two posts in less than one week.... crazy I know.

It has been a fabulous week. I have enjoyed my break a little too much and to be quite honest I am not looking forward to going back to class but I will push on! I will keep my eye on the prize and am looking forward to summer and the last break I will have for the next three years.

Makenzie and I along with her nurse and Mr. 12 had a great day on Tuesday. Makenzie has always loved the aquarium so that is where we headed for her special day. She giggled and squealed and spent a lot of time taking it all in. Her favorite exhibit was the sea otters. They were very playful and Makenzie got a kick out of their antics.

 
 
 

 

It is so much fun to see Makenzie love something so much! There was a day when I didn't know if she would open her eyes let alone turn into such a happy little girl with such an amazing personality!


When we got home I went to the dollar store to pick up a couple of Makenzie's other favorite things...... silly string and a balloon.

We proceeded to have a silly string fight in the middle of the living room and Makenzie played with her balloon so intensely that she broke a sweat. She yelled at that balloon, She laughed as she swung it around.

 
 
We finished the day with a trip to Red Robin for dinner with family and Makenzie got her own piece of cheese cake.

 It was an amazing amazing day!

Makenzie has also been working super hard with her talker. Over the years we have tried many different ways for Makenzie to access her talker. She has been successful to a degree with several different access mode but a few weeks ago I pushed to try a method called step scanning. This method requires the use of two different switches. One of the switches is used to move the cursor and the other switch is used to pick the item.

Makenzie's speech therapist and I spent a couple of sessions trying different switch sites and layouts for her talker language. While everything with Makenzie will always be evolving I think we have found something that Makenzie is excited about and completely understands.

Makenzie is using a switch at her knee to move the cursor and a switch behind her elbow to pick her choices. We have limited the amount of exposure Makenzie has because the school is still refusing to talk to me or her private therapist about the step scanning or her vocabulary changes and I do not want Makenzie to get confused and refuse to use her talker at all. This makes me so frustrated because even with limited trials Makenzie is doing so very well.

However, spring break is here for the kids and Makenzie and I are going to work our hinnies off with her talker over the next 5 days. I am done putting off working on this with Makenzie because the school staff can't seem to learn how to use Makenzie's technology or properly train the people who are with her all day. With that said  I have made an executive decision. Makenzie is going to use step scanning period and will not go back to school until the school gets it through their heads that this is what is happening, load Makenzie's current user area onto her talker, and train the staff on how to use step scanning and her talker to say more than just yes and no.

Here is why:


This is an iPad App from helpkidzlearn called Choice Maker 3. It is set up to work with one or two switches. This app allows you to program the pages on the computer and once you save the activity it can be opened in the app and downloaded for immediate use. This afternoon I made five 15 page activities in lest than 2 hours. It is so easy and Makenzie can play these educational activities completely independently!

We are still working on the motor planning necessary to activate two switches at different times for different reasons but the progress that Makenzie has made in such a short time blows me away! We are also using several game apps to help with this also made by helpkidzlearn. This race car game is one of Makenzie's favorites:
 

This week Makenzie also had her first conversation on Skype with her Granny and PawPaw all by herself. She talked with her talker for nearly 30 minutes. She told her Granny to "come here" which is great because anything Makenzie wants she gets (not really but shhhhhh don't tell her granny and pawpaw!) so they will have to start planning a road trip to come and see her!


Life is good!!!!

Believe.... Prayer Works!!!!




Tuesday, March 25, 2014

Tragic Miracles

It's 4am

I fell asleep on the couch watching The Following.

It is my spring break.

It is March 25th.

It is not a sad day but instead the day I experienced the most tragic miracle of my life.

It is the day I get to celebrate the miracle of life at the same time I reflect on a moment that would change the course of my little family's life forever.

It is a very strange combination.

As I sit on my couch typing, Makenzie's water has run out and I can hear a faint deeee dooo deee dooo coming from her feeding pump in the room where I should be in a deep slumber. Seven years ago I didn't even know what a feeding pump was let alone have one.

Seven years ago I didn't look around my house and see wheelchairs, a stander, a talker, and braces. Seven years ago the term SPED was for kids I knew nothing about, and the doctor was for the flu and strep throat. Home health care? DME? IEP? IDEA? ADA? Yeah..... didn't know about those either.

However, seven year ago this afternoon..... all of that would change. In less then 12 hours I would find myself next to my little girl barley hanging onto life in a helicopter over the city I have lived all of my life. I would settle into a little blue chair listening to the deeee doooo deee dooo of several machines that has become an all familiar song in my life. I would cry, I would scream, and for a short while I would sleep with the hope that when I awoke all of my pain could be chalked up to one really vivid nightmare.

Seven years ago every member of my family experienced a tragic miracle that would alter the course of our lives forever.

While life has not been easy over the last seven years I can honestly say I am happier than I have ever been. I am exhausted and overwhelmed too but non the less happy. Some days the guilt of how one moment in time has effected my boys is unbearable and others the knowledge of what this has taught them and who they have become despite it all is breathtaking. Some days Makenzie's progress seems agonizingly insufficient and others I can't believe how far she has come. It is a rollercoaster, I will not lie, but it is amazing to be able to look back in the face of so much heartache and see so much good in God's plan and provisions for this little family.

So today Makenzie is not going to school and instead we are going to head to one of her favorite places..... the aquarium. We are going to look at fish, turtles, sharks, and eels. We are going to touch things and eat ice cream. I am going to tell her how proud I am of her and how much I love her over and over all day.

I am going to try for one day to let go of the anger I have towards the school and their inability to see who Makenzie is despite her physical limitations. I will try but most likely this day will bring on snarky comments about how amazing my daughter is and how blind they all are. It will bring on thoughts and memories of just how hard I have fought for my little girl, how hard Makenzie has fought and just how pissed it makes me that they limit her and treat her as less. On this day, they will not get to be in Makenzie's presence because they are not worthy of celebrating her amazing recovery and what it has taken on so many different levels to get to this place.

On this day I am so thankful for all of you. For the support and prayers you have so generously given to our family. I have met so many wonderful people on this journey. We are so blessed by each and every one of you! Today I will be thanking God over and over for placing you into our lives. Thank You!

Today is a good day because seven years ago my daughter LIVED!!! NOW IT IS TIME TO CELEBRATE!!!!

 

Believe..... Prayer Works!


Tuesday, February 11, 2014

Overdue Update

Wow long time no post. I think that I have started the last several posts in that same exact way but life has been insane and I think that may even be an understatement. I think about posting often. I come up with words to write here during the day and then I can not find the time to put them down. I miss coming to this place. I miss sharing my beautiful little girl with the world. I miss the community. Buuutttt....... enough of that already.

Last time I posted, I think I left you with a bit of vacation and also of the begining of a nursing issue with the school.

The word "school" pretty much sums up where I have been physically and emotionally since that day.


I am just 2 short weeks from starting the application process to get into nursing school. I still have a 4.0 GPA and was accepted into the honor society. I still love every minute of it. I am currently taking chemistry and have decided that they could very reasonably rename this class " Math on Crack 101". With that being said, I love math and science so I am having so much fun learning about the composition of all things. It really is pretty dang amazing and yes I already know I am a nerd.

However, my college adventure has been the least of my school worries.

About a month before Makenzie started school this year I found out that her school no longer had a nurse. I tried very hard before her first day back to try and get some answers and come up any kind of solution. However, on her first day of 1st grade there was no nurse on the property so Makenzie and I started first grade together. I sat in the back of the class and tried to work on my own homework while leaving the education to the professionals. The problem...... there was no education happening. I had suspected that the school had not been giving Makenzie what she needed for a long time but suspecting it and seeing it with my own eyes was a different story. So the lack of a nurse went from being the only real issue to becoming one of many.

It took many meetings with several district administrators, the school staff, an advocate, and legal representation from an attorney, over a period of two and a half months to finally work out the nursing issue. However, the education issues were a whole different story.

Once the nursing issues were resolved the school decided to change Makenzie's IEP in a not so good way without my consent. We ended up changing schools and things did not get any better.... in fact I am pretty sure they got worse.

New Years Eve Downtown
I have cried tears of sadness and anger. I have screamed profanities and pounded my fist into pillows while no one was watching. There were many days that I seriously contemplated taking down Makenzie's therapy swing and replacing it with a punching bag.

I can not understand why the school system refuses to see my little girl who is adding, subtracting, and recognizing sight words, as a child who is intelligent and able to learn. Makenize deserves more and as a matter of fact she has the right to have more.

Talker and switch on desk.... Makenzie on the other side of the room? Hmmmmmm



I am leaving out most of the gory details because on Monday the weight of the world was lifted from my shoulders in the form of an attorney. I having been fighting this uphill battle alone for far to long. Makenzie is falling further and further behind and the moment I signed that paper I almost cried. There will be no more midnight emails trying to stay professional through the frustration. There will be no more meetings were the "team" considers my suggestions and then does whatever they want regardless. There will be no more disrespect to my daughter's rights and dignity.








I can come here in this moment because I can rest in the fact that I don't have to fight tonight because the fight is now in the hands of a professional who the district can not ignore. No more " you are just a mom and don't know what you are talking about" to worry about. I honestly do not think my heart has felt so light in a very long time. I once again have hope that Makenzie will finally be able to have what she needs and deserves.



Outside of all of the above mess, Makenzie is doing wonderful! She never ceases to amaze me and God has not stopped providing miracles.The boys are working hard in school and Mr 16 (yes you read that right) got his permit and a job. Time is flying by and my kids are growing up way too fast!

I hope to be back soon!!!

Believe.... Prayer Works!

Oh,  picture taking and editing has kinda gone on the back burner as well..... sorry for the phone pictures but I figured something was better than nothing at all!

 



Saturday, August 17, 2013

Summer Fun

Summer oh summer. We have a a good but exhausting summer. I took 2 classes this summer and that kept me pretty busy but the kids were troopers.

Makenzie and I participated in the Color Run with a couple of our friends. We had SO much fun. It was the first 5k we have ever done and we are planning to do many more!

 



Two days after my semester ended we packed up the car and headed to a family reunion to see many of my cousins I haven't seen in almost 14 years. I love road trips and this was the first one I have ever attempted with all of my children. It went fabulous and everyone did great, had fun, and the boys have already asked when we can do it again.

After organizing all of our stuff into the back of the car we headed out. Over the course of 6 days we managed to travel through Nebraska, Iowa, South Dakota, Wyoming, and Colorado. We hung out at the lake, went to a tiny, old, amusement park which my grandparents had once visited on a date many years ago. The boys rode go karts for a good long while and Makenzie giggled on the Farris wheel, log ride, the train and few others. The looks on my niece and nephews faces when they got on their first ever amusement park ride and their first taste of funnel cake was also priceless.



 


In my fashion this road trip took us in a circle and after the reunion we headed to rapid city, South Dakota and were able to see Bear County USA were reindeers would not move out of the middle of the road (quite tramatizing) and bears walk freely all around. We also stopped at Mt Rushmore so that the boys could see the monument and finished our site seeing with a drive through the beautiful Black Hills.


 


 

In six days I loaded and unloaded our stuff 6 times and drove most of the day for 4 of these day but it was worth all of the work. We drove on two lane country roads, had picnic lunches in the middle of nowhere, we admired tiny towns, decided that most of Nebraska smells like poop, and rocked out to Manamana more times then I can count. There was very little fighting and Makenzie did fabulous. It was normal and we had fun.

 

 

 



However, yesterday it was back to real life and right now my real life is driving me crazy. At the end of the school year due to medical reasons our amazing school nurse had to resign and I found out a couple of weeks before we left on our trip that Makenzie's school had still not hired a new nurse. After several conversations with her teacher and the principal I left on my trip praying that while we were gone the issue would be resolved and Makenzie could go to school. However, that was not the case and school starts on Monday and their plan is to have a part time nurse and med tech (that has yet to be hired) who has received 8 hours of district training and no medical education. Without boring you with all of the reasons why this is not ok I will just simple say...... This is NOT ok.

I have been stonewalled by most everyone in the district and have been given many excuses and reasons why this plan is sufficient. They have arranged a meeting with some of the big wigs on Monday and I am ready. I have letters going from the doctors, I have printed out laws from DORA and IDEA, and have contacted and advocate who will be attending the meeting with me. Please say a prayer the this will be resolved because Makenzie loves school and thrives while she is there.

School starts in two days so I am off to buys new shoes and clothes, get haircuts, and finish the supply hunt. It is going to be another busy weekend.

Believe... Prayer Works!

Thursday, May 23, 2013

YouTube

   This morning I downloaded some video that I took of Makenzie riding her bike off of my phone and onto Facebook and YouTube. I booted my computer up and was fully intending to post a video this afternoon of the bike riding but I got distracted. In the last three months the format of Makenzie's YouTube channel was changed and instead of playing one video, it was set to play video after video.

Well, I sat and watched video after video. I watched the video I took of one of Makenzie's very first laughs after her accident and with each video I realized something pretty cool.  I realized that since Makenzie learned how to smile and laugh again I have literally lived in a world of constant laughter and happiness. I challenge you to go to Makenzie's YouTube channel and just let a few videos play. You will be hard pressed to find more than a handful where Makenzie is not laughing even when she is being physically challenged. Every time a video was over and a new one started I found myself with a bigger smile on my face and Makenzie sat next to me laughing at herself laughing. 



God is so good and I am so blessed. There is no doubt that this journey has been hard and many times excruciatingly painful......... BUT......... though it all God brought laughter in the midst of many  storms through Makenzie's amazing personality.

So without further ado........ here is Makenzie riding her bike..........



and here is Makenzie watching a video of herself, riding her bike........



Believe... Prayer Works

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