Thursday, September 27, 2012

Bicycle

Several years ago in therapy Makenzie tried to ride a trike. She liked it but was not able to propel it on her own. I have mentioned trying it again and talked to the school about having one for her at school. This year she has one at school. She rode it once when I was not there and I got to see a short video. Yesterday at therapy her PT pulled out a trike just Makenzie's size. We took it into the lobby and this is what she did.........

bicycle from makenziesmiracle on Vimeo.


Watching Makenzie peddle that bike all my herself was amazing. Every time she does something new I just want to run screaming to all the doctors who said Makenzie would never do these kinds of things. I am so proud of my girl and now we will have to REALLY work on getting her a bike (with better head support) for her to have at home.

This week we also finished up Makenzie's yearly IEP review/changes and it when SO well. Last year I think we had at least nine hours into her IEP before it was even close to functional. This year it took just over 2.

Makenzie is in the normal classroom again this year. She is going to school just over 5 hours a day and even getting lunch there. We have refined her goals and they are going to be great! This year we are going to spend most of her time at school focusing on functional communication with her talker, partner assisted scanning, choices, and gestures. Makenzie understands everything..... now it is time for her to learn how to really communicate what she knows, how she feels, and what she wants, more consistently! Of course she will still be learning academics as well.

I am so pleased with this school words do not do how I feel any real justice. Her aides are amazing, the special ed teacher is beyond wonderful, the specialists are finally understanding what Makenzie needs, the principal continues to advocate for Makenzie, and she LOVES going to school so much that the other day she had a full blown temper tantrum when Ms. Melissa told her is was time to go home. If you had asked me 2 years ago if this was even possible I would have told you.......NO WAY!  I am SO excited to have such a great team for my little girl.

My middle-schooler has received some help with organization at school which has made homework time at home a bit easier. I have had several interesting conversations with the administrators at his school this week. The most disturbing was the one where I was told that in order for him to be formally tested that I, as his parent, would have to submit a refferal requesting the testing. I was told that NO ONE including his teachers could ask for the processes to be started. I just laughed and told him that if that truly was district policy they were way out of compliance with IDEA. At Makenzie's IEP meeting I confirmed with a district employee that none of that information was true. So..................... since they are to lazy to start helping my son I brought a referral letter to the school just make make it easier for them to figure out how to do their jobs. They have 60 days to complete the testing. Ready...... Set........ GO. If they don't think that I have not referenced the school calender and figured out what that 60 day mark is they have grossly under estimated this momma.

I am hoping that this process will not be a battle. It is hard not to be angry when educators have excused away problems and placed blame on a kid who is truly struggling. However, I am going to take the next 60 days to regroup so that when the time comes I can advocate for my son.

My classes are going great. I am really enjoying getting out and doing something that I know greatly enhance my life in the future. I do not feel at all over whelmed and so far am pulling straight A's in all three classes. Getting an A+ on the first test I have taken in 15 years felt so good.

I am sure there is more to say but Greys Anatomy is calling my name!

Believe.... Prayer Works!




Sunday, September 23, 2012

No Child Left Behind

When a child who can not speak, sit, stand, walk, eat, or use their arms, gets ready to enter school the special education team stands in the wings ready to tell you what they can and will do for your child. As a parent you learn about all of the laws, get accustomed to the meetings, and endures countless evaluations. When it is obvious your child will need special help it is not hard to get on a basic level.

What about when you have a child that for all intensive purposes is "normal", a child who for the most part made it through elementary school with good grades and had proficient state testing scores until middle school? Would you assume anything was wrong?

For the last 2 years I have been listening to my son's teachers tell me that he needs to focus, pay more attention, and try harder. I have received the homework lecture about a hundred times but no matter what I do his grades have been less then great.

The beginning of this year when the state testing score arrived in the mail I was shocked to find another disturbing piece to the puzzle of our struggle with school. Up until now my son's scores on these tests where still at grade level despite his performance at school. What I was looking at this year was however a different story.

So I called the school. I got bounced around from one person to the next. Each had their own explanation for my son's failure. First it was.... "Middle school is a rough transition. He will be just fine. He's a great kid." Then it was....... "Well, maybe he has just taken that test so many times that he just didn't try." and finally it was, " There are three parts to your sons education, the teachers, the parent, and the child. I really think that your son just needs to be more motivated and try harder."

 

However, if you have read this blog more than once you know that excuses and blame pacing do not work for me when it comes to my kids. So I took matters into my own hands and had private testing done to find out if there was more to this than my child's will and lack of desire to learn.

Turns out my kid is VERY smart. Unfortunately that is not the end of the story. He also has some profound hurdles to overcome when it comes to learning.



I sat down with his teachers and the school administrators this week. I handed them the results and to say they were less then helpful would be an understatement. We talked a lot about how to get homework home and back to school again but not a lot about what any of it meant while he was at school other then preferential seating. At the end of the meeting I asked the administrator who I would need to contact about further district testing and whether or not we should pursue and IEP or a 504 and her answer shocked me. She proceeded to tell me that she herself dealt with 504's but not IEP's. Then she told me that I needed to figure out which one my son needed and then let her know and she would handle it from there. REALLY? I need to figure it out? And wasn't my testing enough to want to start the process to figure this out right away? Nope guess not.

 

After our meeting I took the test results to a friend who is an educator. She opened the folder, looked at the results, her mouth dropped and from her lips she was able to utter....."OH, MY.... YEAH"  She told me that that he needed an IEP and explained what to do in order to get them to focus on the issues at hand.

What I want to know is since when did it become ok to over look a child who hasn't passed a core class in 2 years? Since when do we blame the child and offer so many excuses for why a child  isn't succeeding?



I don't really think I want to know the answer to that question. What I do know is that I have been playing the IEP game now for over 4 years and I am damn good at it. What I do know is that unhelpful people better get out of my way because this momma bear is coming through. There will be no more excuses and ALL of my children will get what they need to succeed.


Sunday, September 16, 2012

Growing Up

Yesterday Makenzie and I sat on a blanket in the shade under a tree. Speckles of sunlight bounced around with the windblown tree branches as Makenzie giggled. Though the cover of the trees we could look down onto the white lined field. We could hear the fans cheering, drums pounding, and the announcer confirming a red and green touchdown. It was homecoming day. We were winning. As I sat there with my girl perched in the perfect spot to see the game, without the noise or out of the hot sun, a rush of amazing peace and joy rushed over me.

I have never been to a homecoming game before. I have never had a reason until this year. This year I drove my freshman son down to the field. I watched as he entered the stadium wearing his green football jersey, toting his school ID, to meet his team mates in cheering on the varsity team. I watched my boy all grown up be a part of something bigger. Something new and exciting and I realized that I had done it. I had given him what he needed to transition into high school and brave the new and unknown with his head held high.

 

Not once has my son wavered. When he told me that he wanted to join the football team I am sure the look on my face was priceless. My boy who has not played a sport since he was five picked the most intense sport possible.  He was adamant so I was supportive. He joined the team, he has gone to practice, he has played in the games, and he has made this mommy so dang proud!

 

Last night Mr 14 went to the Homecoming dance. When I dropped him off my heart was heavy and my stomach was sick. While I know my kid is a good kid the horror stories of what goes on at those kind of events plagued my mind with worry. On the way to the school we went over the ground rules and talked about why following these rules were important. At 11pm I picked him up. He had a smile on his face and my heart could rest. One more new experience down. One more step in the growing up process.

In other news Mr 11 had an ultra sound this week and it was decided that the blood clot was all but GONE!!! So after a year of medical issues, surgeries, drains, PICC lines, ABX's, and blood thinners, he is DONE with treatment and should have no more issues from this whole experience! We will wait for a couple of weeks to be completely cleared for him to go back to his normal activity level but there is an end in site.

School started and we also all had the first round of back to school colds. Everyone seems to be on the mend which is a good thing!

 

Makenzie is doing GREAT in school and I am in love with all of her teachers. It has been reported that her processing skills have improved by leaps and bounds and she is much more attentive in class then last year. She has made some new friends and always has an exhausted smile on her face when I go to pick her up.  We are still in the process of training a new aide and also familiar teachers and her aide from last year on new equipment and her power chair. We had our first IEP meeting at the end of this week and will go back in to hopefully finish is either this week or next.

Other then this mommy being completely exhausted, life is AMAZING!




Thursday, September 6, 2012

Juggling Act

Sometimes life with 4 kids can be like a hysterical juggling act. The balls flying in all direction. The juggler loosing his balance and just barley catching all the balls before each and everyone of them hits the floor. The kind of act that gets 3 buzzers in America's Got Talent. At the same time it is like a magic act that leaves your mouth gaping wide because you have no idea how the magician pulled that crazy trick out of his hat.

I wonder often how life got so dang busy. I wonder where all of the lazy days have gone and if they will ever return.

I woke up this morning know it was going to be a day that would go from the time I got up until late into the night. It started at 6am with the rising sun, dressing, breakfast, teeth brushing, hair doing, backpack finding, and  three kisses before it was time for therapy at 8am.

I spent the two hours Makenzie was in therapy making phone calls, doing dishes, applying makeup, getting dressed, doing laundry, readying formula for school, gathering my psychology stuff, and participating in what Makenzie was doing.

By 10:30am it was time to load Makenzie up into the van and head off to school. I rushed her in. Helped switch her chair and rushed back out to the van. I now officially had 20 minutes to make it across town to make it in time for my class. I walked in with about 30 seconds to spare.

After class and on arrival home I was feeling quite ill. I pushed through making Makenzie formula, tried to eat, and conceded to a short nap hopping that I would feel better before spending 2 hours in the sun at my sons football game.

I set the alarm on my phone. Once I pushed save it told me I had 38 minutes before the obnoxious tone would remind me to continue on. About 10 minutes into my "nap" my phone rang. I looked at it and set it aside. It could wait. 15 minutes later it rang again. I contemplated completely ignoring the ringing but decided I should check because it could be about Makenzie. It was my son. The one who was supposed to be on a bus heading to his game with the rest of his team.

"Mom" he said. I could hear a bit of a crackle in his voice.
"Can you take me to my game?"
Half asleep I responded with good ole faithful
"huh?" I was really confused and half asleep at this point.
"Where is the bus?" I asked
" I was with the trainer in the locker room getting my ankle taped and they left without me."
I was slightly more awake and had managed to rise from the couch and into the kitchen.
The game started at 4:00pm. I was at least 30 minutes away from the field, and it was now five minutes to three.
"Of course I can take you..... I have to go get your sister, pick up your brothers, and then I will be there."

By this point I was running around my kitchen gathering Makenzie's dinner, afternoon medicine, and ice packs to shove into the cooler. My neighbor boy came over just as I was walking out the door to catch a ride to track practice so I rushed him out to the van while simultaneously sending Makenzie's aide a text message telling her I would be there at 3 and jumped into the van.

I felt myself loosing my balance. At any moment I could envision every ball hitting the ground. I think for a second about throwing all of the balls at the wall, picking up my kids and just going home. I gave myself a pep talk and threw the next ball up into the air. 

Makenzie was ready to go as soon as I pulled up to her school. I headed to the high school to pick up my stranded football player and was off to pick the other two up from the middle school. Mr. 13 came right to the car but Mr 11 decided for the first time since school started that it was social hour instead of waiting out front for me.

I began to get frustrated. The look on my face must have been priceless because three people could sense my stress and asked what they could do to help. Eventually we found my missing social child and we were off.

I was planing to drop off Mr 11 and 13 off at home before I left for the game to spend some time with their grandma but the change of plans left no time for that if Mr14 was going to make it to his game before kick off.

We pulled into the parking lot just as the team was lining up to punt the ball. Mr 14 ran to the field and I headed out to find a parking spot. After circling the whole lot I realized that the handicap parking was the farthest parking from the field and stress turned to anger.

I parked and got out of the car. I picked up my phone to call grandma to tell her that the boys where not home but I had no service. Crap. I took a deep breath and decided that I could not do it all and resolved to the fact that grandma was going to show up to an empty house, she would call, it would go straight to voice mail, and I would have to apologize later.

We watched the game and I grinned with pride when my son stepped onto the field. My phone worked long enough at one point  to tell grandma where we were and she was able to meet us at the field. We ended the game loosing but had a great time.

The bus did not leave Mr14 behind again and I drove home to drop the boys off at home where my brother was waiting with dinner. I pulled out of the driveway one last time to pick Mr 14 up at the school.

We ate dinner with my brother who is leaving early in the morning to head back to Korea for another year. I got Makenzie to bed an hour late, and then spent some good time with my brother and the boys. We gave each other one last hug that has to last for far too long and he was out the door to finish packing.

The boys went straight to bed and I sat down on the couch. I took a deep breath, and set set my juggling balls carefully down on the floor. I did it. All of my babies got what they needed today. I got to say goodbye to my brother, and life is good.

People ask me all the time how I do this alone because days like today happen more often then they don't. Just when I get in a good rhythm someone throws in another ball and I have to adjust.

The magic is my secret but because I am not a good magician I will share it with you......

One foot in front of the other and a whole lot of leaning on God's Grace to get me through these kind of days.

Believe... Prayer Works









Saturday, September 1, 2012

Checking In

I have been talking about this year for a long time. The year when I have 4 kids in three different schools. This year my oldest started high school. Mr. 11 and Mr 13 are in middle school and Makenzie is in Elementary school. They all start at different times and get done at different times. Each of the boys have 6 or so teachers each and Makenzie's team consists of 8 adults not including her specials teachers. The boys together have about 18 different teachers in 18 different classes. There is one of me, 4 kids, and a total of 26 different school staff to communicate with.

(Makenzie all ready for her first day of school!)


The boys have been back to school for 2 weeks and Makenzie started on Monday completing her first full week yesterday. This year Makenzie is in Kindergarten.... again. She is going to school 5 hours a day, which is 2 hours more then last year. She has the same aide as last year along with a new aide who is training to be with Makenzie as well for a couple hours a day. There is a new special ed teacher who I LOVE and hopefully soon we will get staff training done soon so that her walker, powerchair and stander can be brought to school.


I started school on Tuesday and while I think it is safe to say that I will never want to become a psychologist, I enjoyed getting out of the house and thinking about something besides being a mom for a change. During the first class the instructor did an icebreaker of sorts by asking us to state our name, learning style, and something interesting about ourselves. She quickly followed the last direction by telling us that how many children we had was not interesting so I was going to have to dig a bit deeper.

The first thing that popped into my head was Makenzie's accident but I quickly rejected that thought because most people find that bit of information tragic not interesting and besides going to school was about me not Makenzie. I rejected the thought of telling the class that this was my first formal education class I had taken since I got my GED 14 years ago. That is fun and exciting information but I didn't want to be interrogated about my life history like the guy in the front row who proclaimed the same tidbit because again my history is something that could have taken the next 4 class periods to make it through. So I had three quarters of the class to think. When it was my turn I stated my name, told the class that I was a kinesthetic learner, and that before I had kids 15 years ago I taught karate. Bet ya didn't know that.


When I got in the car I was smiling from ear to ear. I was so proud of myself for being able to dig up something about just me. Something that wasn't about kids, brain injury. IEP's, or therapy. I did it and in that moment I realized that I wasn't lost. The ME (and no... that is not an acronym for anything!) which I have neglected for so long was still in there.



Next week my English class starts and the the week after that algebra so I have spent some time trying to better organize my life. I have enlisted the whiteboard calendar with color coded dry erase crayons. I am feeling a bit like Michelle Duggar. 


(I also took up bow making this summer.)

My 14 also decided that he wanted to join the high school football team. He has never played football in is life so I am a bit nervous for him but super excited and so proud! His first ever game starts in just over an hour!!

I am hoping that I can fit more blogging in. I may have to crayon a regular time onto my white board!

Believe.... Prayer Works!

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