Friday, December 14, 2012

New Beginnings

"It's not about perfect. It's about effort. And when you bring that effort every single day, that's where transformation happens. That's how change occurs." -unknown

This post marks the end of my very first semester of college classes. I went into this new endever having no clue what to expect and I came out feeling very confident that my original goals are more than attainable.  I do not have official grades at this point and am waiting for a couple of papers to be graded but I am expecting to finish this semester with a 4.0 GPA.

The last 16 weeks have been a great ride and quite life changing. I spent most of the first part of this semester beating myself up for not going back to school years ago. I had no clue how many misconceptions higher education looked like and realized early on that it was not nearly as intimidating as I thought it would be. However in the midst of my negative self talk, I was also reminded that God opens all the right doors at just the right time. I realized that this timing gave me the last 15 years to focus solely on my children and be fully present in our time of crisis. My academic refreshing  has also come at a great time to help my boys through high school and one day college.

The reality of being a mother for me, even through tragedy is simple.... I do it because I want to and because I love my children with all that I am. It is not a job or an accomplishment of some sort. It is my life and even though it is a fairly thankless job, I would have it no other way. However, since becoming a mother I have put many, if not all of my aspirations on hold to be there for my kids. I have not dared to dream for anything but my children for a very long time. This semester not only showed me that I am smart, and more then capable of achieving a degree, but also that I can follow my dreams at the same time I dream for my children and  give them that they need. After 15 years of the mystery of child rearing, the simple concept of doing something and then receiving feed back in the form of a grade and many times a pat on the back for a job well done feels so good! This new era of my life has given me a confidence both as a mother and an individual that I have never had.

This time has also helped me re prioritize many things in life. For a while now I have felt that life is "normal" again. I feel as though this family has done a great job moving beyond Makenzie's accident and I feel very whole again. I have spent much time looking at life and trying to figure out where we go from here. Going back to school was a huge part of that thought process.

I have also thought a lot about the internet world that was such an integral part of my healing and support after Makenzie's accident. Today, I find that I spend much less time participating in forums, support groups, and research then I did a year ago. I have also contemplated the current purpose of this blog. Many times I do not know what to write because I feel like it is all a bit of the same. Makenzie is doing great, the boys are growing up, and we have not tried any new therapies or treatments to report for over two years now.

I have come here to write for the last five years for many different reasons. In the beginning it was to inform my family and friends about Makenzie's progress, to ask for prayer, and to release emotion. As time went on I realized how many people I had met and could meet through Makenzie's story which then turned into the desire to help those who where walking the same or similar roads.

Every time my thoughts about this blog have evolved there was one thing that remained unchanged and that is and always will be to share  Makenzie's strength and healing as well as God's perfect plan through all of this. I have watched Makenzie's story and God's power touch so many, including myself, over the last five years. I have documented our journey and the power of prayer to remember for generations to come. I also have all of you and the many beautiful comments of support and love which I will cherish forever. This little place on the internet means so much to me!

However, I am not sure where to go from here. This is not some dramatic way of telling you that I am going to quit posting because, I am not going anywhere. However, most days there is not enough "Makenzie" news to write about and am not sure if my readers are interested in my school endever, the boys, hockey, and the rest of my "normal' boring life.

So with that said, I am going to get back to my boring life. The one were the flu virus is going around and my daughter stayed home from school because she had and upset tummy last night. I am going to get back to making cake pops for teachers who do an excelent job, making dinner, giving baths, and tucking my four beautiful children safely into their beds so that we can begin again tomorrow. To be quite honest...... I am in love with boring! I have not had near enough of it in my life! So here's to new beginnings. Cheers!

Believe... Prayer Works!



Sunday, December 9, 2012

Our Normal Busy



It is 9:15 pm and I am at the rink for the third night in a row watching the boys play hockey.  It has been a crazy but overall good couple of weeks.

The week of Thanksgiving Mr 11 was sick with a cold. The week after thanksgiving Makenzie was sick with the same cold. In the middle of a couple little sickies we still managed to have a good Thanksgiving with family.

I found out last week that our bathroom remodel has finally been approved after fighting with the county for almost 2 years. We are going to have to pay for a walk in shower to be installed because they would not instal both but that is a small expense compared to what the whole project is going to cost, I am so excited to start picking out tile, fixtures, and colors. Other then a ramp into our home this is one of the last big steps to have a home that is fully accessible for my girl! Blessed!


Last week we also went down to Makenzie's seating company and picked up her new chair. She now has a new seat that fits her perfectly for both her manual and power chair. Makenzie is sitting up so much taller and her head looks great. We will go back in January to have her second seat remade after making sure the fit is just right.


We also managed to get the Christmas tree up. We pulled out the fake tree that we have had for the last 5 or so years. It has been beat up but cats sitting on the branches. We got it up and started fluffing the branches. We all stood back and looked at it. Then looked at each other and agreed that this was going to be a real tree year. The first real tree we have ever had. We had a ton of fun picking a tree out and watching them load it onto the van. Our neighbors gave us a tree stand and help cut of some of the extra branches. It smalls oh so good! Makenzie as usual loves the lights of the tree and spent much of our tree trimming time grinning from ear to ear.   



Makenzie is also doing great at school. We had a follow up meeting yesterday with her team to talk about progress and services. Makenzie is constantly changing and so is the structure at school. She is doing great with her power chair and trike. Watching her learn independence has been so much fun! It has also been a bit of an eye opener for me on what is most important for Makenzie. She still has many education goals but it was decided that there needs to be much more focus placed on practice in her power chair, and purposeful communication. At the beginning of the year Makenzie will start receiving Speech therapy 5 days a week at school and we also added 30 minutes per day of additional one on one time with the Special ed teacher. I am so excited! I just love Makenzie's school! I am so thankful for how much each and everyone that works with Makenzie cares for her. 

 

Tomorrow Makenzie and I, along with a few friends will be playing hookie to go to Disney on Ice! The Starlight foundation offered tickets to this event and Makenzie is so excited to go. I have asked her several times if she wants to go see Mickey Mouse and she just grins from ear to ear. I am so excited for her. When she was little I dreamed of the the day that Makenzie and I would have mommy daughter moments to see the Disney princesses and since her accident it has never happened! This is not the Princess show but I will take it! 


I know that there are several other big things that happened in the last couple of weeks but right now screaming parents are interrupting my thought process and in 2 minutes and 48 seconds it will be time to pack up and head to bed. 


Hope to be back soon with pictures of our Disney Adventure!!!

Believe... Prayer Works!

Friday, November 30, 2012

Bitter Sweet Healing


 This last week has been a crazy one with sick kids, long days, longer nights, intertwined with Thanksgiving, and school. I will try to write about some specifics of our week later and know that everyone is now well again but tonight I want to share a few things that are amazing and incredibly touching.

About 18 months ago my youngest son was very sick. I took him to the ER and was told her had a stomach bug. I knew the doctors were not right and three days later my fears were confirmed when an ultra sound showed a ruptured appendix. After two drains, 14 ish days inpatient at the hospital and 30 plus days of IV antibiotics,  Mr 11 was cleared and we went on with our lives. One day Mr 11 came home from school and told me his belly hurt and when I touched it he screamed. I knew what was going on, I packed our bags, took a shower gave Makenzie a bath, and we headed back to the hospital. Yep, another infection, and another hospital stay.

Mr 11 was treated again with IV antibiotics and removing his appendix that the previous hospital did not feel needed to be removed was scheduled. His PICC line was removed and a week later a large blood clot was found and we were back in the hospital for blood thinners, and ECHO, and intense monitoring. Mr 11 was on blood thinners at home for three months. We have done some  blood work and several ultra sounds over the last few months have shown the clot to be healing but we have still been able to see some residual clot that needed to be monitored for change.

While Mr 11 was in and out of the hospital we met some amazing people that we have stayed in contact with for the last 6 months.

Yesterday we went back to the hospital for another US and found out that Mr 11's clot is COMPLETELY RESOLVED. There is no scar tissue, no collaterals, and no residual clot. As far as the radiologist was concerned there was never a clot at all. YEAH GOD!!!!!

So we are done with this part of our families life.

However the day I found out my son had been given complete healing I left the hospital thinking about a young man and his family. I drove away thinking about all of the moments Austins mom and I shared while Mr 11 was in the hospital. Austin's mom and I spent  time over the last 6 months talking, sharing our stories, hugging, sharing tears, and just being within the walls of the hospital together. I grew very quickly to love this family. A family whose journey is so different then mine, a journey that needs a miracle if it is to have a happy ending.

You see, Austin has cancer. While Mr 11 was inpatient Austin was getting ready to undergo a bone marrow transplant. This transplant was his hope for healing. Austin got his transplant shortly after Mr 11 was discharged (the first time) and it was a success. However, soon after he began to heal and prepare to go home, new tumors where found and after one last effort with cyber knofe it was determined there is nothing more that can be done to cure Austin's cancer and now all that is left to do is live and pray for a miracle!

Austins dream was to own a very specific car. Over the last month our community has rallied around Austin and his family and this week his dream came true. Please check out this video of how Austin came to own a 1972 Chevelle because any words that I put on this page could not possible do this story any justice. This family needs a miracle. This family needs your prayers.Please pray for complete healing and restoration of Austins body. Please pray for a miracle that only can be explained by God's mighty healing power. Please pray!



Believe... Prayer Works!

Sunday, November 18, 2012

Honored

This week ended on quite an amazing note.

A couple of months ago I talked about the possibility of Makenzie getting her very own tricycle. Well it looks like that will be happening sooner then later!

We attended a fundraiser last night put on by my states chapter of the non profit company, Ambucks. It was at an amazing little Italian restaurant. We were treated to a wonderful dinner and got to watch as many people walked through the door to donate to Makenzie's tricycle.

They had all kind of games set up including jumbo Jynga, an orange toss, and plinko. The main part of the fundraiser was a mustache shaving auction. The men had grown bushy beards and the highest bidder got to choose whatever style mustache they wanted shaved on each man. It was a so much fun to watch!

Makenzie was the super star. There were so many kind people there who were so excited to see my special girl get a tricycle. When all of the men got together for a picture and Makenzie was squashed right in the middle my heart felt like it was going to explode with joy and pride. Yep..... that's my kid right there in the middle. The kid who brought all of these wonderful people together!

I am so honored and feel so blessed.

Makenzie is so stinking excited!

Thank you to everyone who came out to make this happen for Makenzie! It really does mean more to our family then words could ever express!

On another note.... I think I have officially turned into a big nerd. Last week one of my instructors told me  she was going to nominate me for the "student of the month award". Again..... I am so honored! I am going to school for my family, for me, and for a brighter future. I am loving it.... yes I already stated I am now a nerd. I look forward to going to class and am having a great time writing papers and doing algebra homework.

My instructor wanted to know how to describe Makenzie as she wanted to put in the nomination something about me being a a single mom to 3 teenagers and a child with disabilities. After she asked about Makenzie she noted that she was not doing this for pity but instead because she knows that I do not want pity and  even though I already have a lot going on I am thriving in school, do not make excuses, and advocate for for my children all at the same time.

I am cool with the nerd thing! I am really so proud of myself and yes I am tooting my own horn! There are 3 weeks left in this semester and as of right now I am on track to a perfect 4.0 GPA.

One last note, for those of you that asked about the piece of equipment Makenzie was using at the sink in my last post, sorry it has taken me so long to get back to you! That is the orthopedic piece to Makenzie's Taos walker. 



I couldn't find any resent pictures of her in it but here is one I took shortly after she got it.

We use just the body piece a lot to help keep Makenzie's body in correct alignment while we do sit to stand activities. It is a wonderful piece of equipment!

I hope you all had a great weekend! It is time to get ready for a short week of school and a holiday!!!

If I do not have a chance....

Happy Thanksgiving!

Believe.... Prayer Works!

Saturday, November 10, 2012

Blessed

It has been a somewhat exhausting week. The kids just came off of fall break and this week they had another short week due to conferences.

 

Fall break happened for the kids but it did not happen for me. I still had classes and for the first time got to practice coming up with plan a and b to find care for Makenzie so I could get to school. On Tuesday a good friend held down the fort but my plan b failed when another friend came down with a really bad respiratory virus and could not keep Makenzie. So on Thursday Mr. 13 and Makenzie got to experience psychology and algebra. They did a great job and I passed my algebra test with flying colors despite the obvious distraction. I had to laugh when my instructor expressed concern about this distraction and I told her that this was my life and I would be just fine and I was.


 

On Saturday Makenzie and I went to our first ever political rally. It was really a ton of fun. Makenzie loved the drum line and was very interactive with every one we met. We got to listen to some good music, and hang out with a whole bunch of people who just loved being Americans. To be quite honest in the 5 and a half hours that we were there, there was not much political talk going on. Everyone just seemed to enjoy the experience which made the whole thing so enjoyable.



Then election day happened and I found myself much more emotional than I have ever been about an election. Over the last few months it has become very clear that the special needs community is split very passionately right down the middle mainly on health care issues. Social media has been very intense and looking back I believe the extra emotion is not a increased passion on the issues at hand but more the effects of social media or as I like to call it, Facebook Syndrome, had on the whole ordeal. At the end of the day we live in the most beautiful county. A country where we do not all have to agree, and for that I am grateful! Not a single president has ever been unanimously voted into office and our differences are what make this county such a wonderful place.



So we move forward praying for the leadership of this country.

 

On Wednesday football officially ended for Mr. 15 with a banquet. It was so much fun and my son got an award for the most improved player. I am so proud of him! He stuck with it, made some great friends, and had a great time in the process.

Tonight through the exhaustion I am feeling so blessed. As I tucked Makenzie into bed tonight I gave her a big kiss and told her how smart she was and how proud I was of her. She got a huge smile on her face, extended, kicked her feet, and squealed, letting me know that she understood. Life is good!

Believe... Prayer Works!


Sunday, November 4, 2012

Halloween Tantrums

How many of you have seen a seven year old throw a temper tantrum? Given the fact that I have 4 children I can say I have seen a tantrum more times then I can count. But how many people do you know that love to see big tears, screaming, and the flailing that comes when a young child doesn't get what they want? I do!

Makenzie does not ever cease to amaze me. I say this because last night she pitched the biggest fit I have ever seen. It lasted for a good 20 minutes and she was not backing down.

It started on our trip to Walmart. It was almost 4pm and we were on our way to pick out a Halloween costume. (yes, I know that was a very last minute move!)  We talked about going trick or treating and about what Makenzie wanted to be. Morgan was going to be a pirate and so Makenzie got very giddy when I offered that option. So a pirate it was. We walked around Walmart picking up a white sweatshirt, spray paint, some elastic, buttons, and a beanie to top it all off. Makenzie giggled and laughed the whole time. She was so excited.

As we walked back into the house Makenzie started to fuss. I explained to her that I needed to get her costume ready and asked Mr 11 to entertain her for a few minutes so I could spray paint the stripes on her shirt and sew the elastic and buttons on so the sweatshirt would fit over her coat and around her chair. Makenzie was on and off cranky but I just thought she was bored and tired of sitting in her chair.

Just as I finished her costume Mr 15 called for a ride home from football. I put Makenzie back in her chair and we headed out to the car. She started with the pouty face. I asked her if she was mad that it wasn't time to go trick or treating yet and she started to cry. I then asked if she wanted to get out of the van to trick or treat and the tears stopped and immediately a huge smile crept across her face. We picked up her brother, drove home, and the real full blown tantrum started the second we walked into the house and she realized that it was still not time to go trick or treating.

For 20 minutes she cried big tears, held her breath, extended her whole body, and whimpered. It didn't matter what I did. I tried holding her, turning on the TV to distract her, asking her brothers to play with her so I could finish getting ready.... nothing worked. I finally got her iPad programed to say "trick or treat" and "thank you" and the whole tantrum STOPPED! I laid her on the floor with her iPad and she pushed that button over and over until it was time to go.

Makenzie knew exactly what she wanted and in the midst of her tantrum my Mommy heart swelled with sheer happiness. I have waited for so long for this little girl to throw herself on the floor screaming until mommy gave in and last night she did that! Makenzie has thrown fits before and let her wants and needs be known but this fit was different, it was long, she was so stubborn, and she did not stop until I gave her exactly what she wanted! LOVE IT!

As for the trick or treating..... Makenzie giggled and squealed for 2 hours straight. She rolled up to every single door and pushed her iPad to say trick or treat and thank you. We did not leave one candy giver without a smile and she ended the evening with a huge bucket of candy for her mommy! 

I have never been a huge fan of Halloween but after last night I am pretty sure it is now my favorite holiday!!! Watching my little girl do exactly what all the other little kids are doing is amazing and knowing though her tantrum, that she understood what we were getting ready to do and how excited she was to go trick or treating makes it all that much sweeter!

God is so good and I am so blessed! Miracles continue to happen everyday around here and for that I am so very thankful!

(Sorry for the lack of pictures my computer is refusing to read my SD or Compact Flash card!)

Believe.... Prayer Works!

Saturday, October 27, 2012

Progress



Well its been another week of busy craziness.

Makenzie started the week off with a cold. She missed school on Monday but by Tuesday was ready go back. I am so thankful for her strong immune system, something that was quite weak before we did stem cell therapy. Despite being under the weather she had a great week at school. Friday her aide was out and her teacher was sick so we got to stay home again and cuddle all day! It was so nice to not have anything to do but spend the day with my girl not once but twice this week! 

 

I went in to the middle school at the beginning of the week to follow up on my conversation with the psychologist and found out they had my son on the calendar to be tested on January 10th. I was furious. They legally have 60 business days..... not just standard business days..... like 60 full days that the school is open. So take out fall break, Christmas break, and three days for Thanksgiving..... yeah. So  doing the math on that one they legally have until the middle of January to do any testing and after that they have another 30 open business days to incorporate any modifications into the classroom.  Doing more math..... that is almost the beginning of April...... school gets out in June.

Our conversations did not go terribly wonderful and ended with me telling the psychologist  I was disgusted with the fact that he would consider standing on policy before helping my son after ignoring his struggles for over a year. I also talked with the 8th grade dean which went about the same..... until I got a call the next morning to tell me that they would be completing the testing within the next 3 weeks. Thank You, thank you very much.

I do not know what they will find but any information at this point would be helpful. After speaking with the private school a bit more this week I am not sure it  will be an option for our family. They do not give full scholarships and coming up with $15,000 a year even after the largest scholarship they offer is not very realistic for me at this point. With that said I will gear up to battle with the school and continue to search for other options as well.

I am one edit away from finishing my first research paper in 15 years. This is where I out myself as a nerd because I have to admit I had a ton of fun writing it. I am also getting ready to start the biggest paper in my English class and at this point my fears about whether or not I could be successful in going back to school while managing the rest of my life are all but gone. The schedule for next semester will be open for registration next week and I have decided to take 14 credits and officially go full time. 


I am sitting here trying to think of something else to write about Makenzie since this is technically her blog but I can't come up with anything. She is doing so well. She loves school, she is thriving and as always happy. God is SO good!

Life is awesome, super busy, and totally blessed! 

Believe... Prayer Works!

Friday, October 19, 2012

Plan B

Well the wheels have been turning around here. I have spent a good amount of time this week dealing with the public middle school and their lack of communication and unwillingness to help my son. After numerous conversations with several professionals at the school I am beginning to wonder if it is more about lack of knowledge then unwillingness. Frustrated does not even begin to describe my mood these days.

So in true mama bear fashion I began to look into other options for my children. A plan B that would award them the opportunities to learn in an environment that is more conducive to their needs.

On Wednesday I toured a private school that was AMAZING! Their class size is 10-12 students. They teach all 4 learning styles, the modify and teach to each students level but do not dumb down the content. This all comes with a  90% graduation to secondary education rate.  I could give you the full novel version of my experience but it would be very long. The bottom line: It was wonderful and I know that my kids would thrive there.

Of course there is always a catch 22 to most good things. For starters I mentioned that school is private. It is VERY pricey but they do offer scholarships. The application process is also long and tedious requiring a parent statement, child statement, and statements from two teachers. Te other thing they require from application submission is extensive cognitive and achievement testing to be done. After making several calls to psychologists the price range for this testing which is not covered by insurance is anywhere from $600-$1000 per child. Chump change..... or not!

So I have been plugging away on the testing trying to find a cheaper way to go about it and today I hit the jackpot. I found a clinic that has a good sliding scale and will be able to get two of the boys tested for $500.00. God is good! They are not able to get us in until January but if this school is where God wants my kids to be I trust it will happen.

However, for the remainder of this year I have one son that is very much struggling. The school has agreed to formal testing but they have sixty operation days to complete the testing and then another 30 days to implement any of their findings. If you do the math on that one it will be the first part of April before they would be legally obligated to "help" my child.

I went into the school to speak with the psychologist yesterday and it did not go well. To say I am tired of excuses would be an understatement. I will not narrate the whole conversation but some of my favorite quotes from the 20 minutes I sat with him were:

"Well you do know that private schools get to hand pick their kids and we have to take everyone." (good to know, somehow that does not make me feel any better about your ability to educate my child.)

"What is it that you would like us to do? What do you think would help Mr 13?" (Uh yeah... I have some ideas but last I checked you were the professional and should be the one to have some ideas?.")

" We don't even know he if will qualify for accommodations until the testing is done. He may not qualify" I notified her that  I would be seeking a second private opinion if I disagreed with their finding.. He retorted with:

"Oh you don't want to do that it would be very expensive." I looked him square in the eyes and said "I wont be paying for it you will."  and then reminded him that under IDEA I had the right to a private second opinion at the districts expense.

That tid bit of fact brought on the most profound part of our meeting. His response to my knowledge of the law was:

"It sounds like you just want someone to pay for this." (like as in revenge) (I believe that comment came because I made him aware that they have missed all of the signs and failed to refer my child for intervention for over 2 years and I made it very clear that I was not happy about it.) (and further more Mr psychologist I just want my kid to experience some success and get an education. That is my only motive, Thank you very much.)

Then he stated the obvious. "It sounds like you don't think we are doing a very good job." (Ummmmmmm...... you couldn't be more correct.)

Moving right along to the " It sounds like you are angry." and to that I told him that he was grossly misunderstanding our conversation. I explained to him that I was not angry at all. I was a mom, sitting on his couch advocating for my child and explained that I would continue to do so until I felt like he was getting what he needed.

Our little talk ended with him telling me to let him know when I had specific ideas on how they could assist my son better and he would do this best to make it happen.

I am pretty sure he opened a box of worms he isn't prepared for. I am guessing when I get my list to him he will be wishing he had just thrown out some ideas instead of stonewalling me.

Ready or not....... Here I come!

Believe... Prayer Works!





Tuesday, October 16, 2012

Recess


Here is a video of Makenzie driving her power chair at recess this afternoon. I just loved to watch all of her friends play with Makenzie.  She was so happy! So proud of my girl!!!!


Sunday, October 14, 2012

Independence

It is Sunday afternoon. I am sitting at the kitchen table in my pajamas helping Mr 15 do his homework. Ok so I am forcing him to do about 10 assignments that are now late in one class that he can not stand. Between picking up Makenzie's doll off the floor after she knocks it down and laughs and prodding my son along, I may finish my English paper.

Mr 13 is off with a friend getting chilies so that they can make salsa and Mr 11 is playing on the computer. I love laid back Sunday afternoons.

It really has been status quo around here this week. Not much new going on which I guess is a good thing.

Makenzie had a GREAT week at school.  I was able to get her power chair to school, train the staff, and adjust some of the switches. She rocked out! We are working on being able to keep her arm on the forward switch for smoother movement. Makenzie gets so excited when she makes her chair go that she lets go of the switch. Last week Makenzie made about 7 FULL laps around the school in close to continuous motion! I helped steer left and right and we also worked on stop and go on command. During the time she was in her chair she also managed not to run any of her friends over!



She is also loving the trike. I also went into the school early last week to help with some positioning issues and to watch her movement more closely in the trike. By the time we were done she had rode across the school into the cafeteria, around the cafeteria, played a round of football with the nurse, and raced one of her buddies back to the classroom. Other then steering and a few prompts in the beginning, Makenzie propelled that trike all by herself.  I also received two phone calls this week from Makenzie's aide to tell me that she had pitched a huge fit when told that it was time to put her trike and power chair away and go back to class.

 

On the trike front, we also met with some really amazing people who are going to help fund a trike that Makenzie can call her own. Makenzie's PT and I took measurements and specked out the things she would need on her trike. We them sent all of the paperwork to be reviewed and I was told that Makenzie should have her own state of the art customized to her needs in the next couple of months! To say I am excited for her would be an understatement!

(the pouty face that comes with a temper tantrum. After this comes breath holding, alligator tears, and sobbing)

Watching Makenzie become more independent over the last couple of months just makes my heart  swell. Picking my girl up from school and seeing remnants of tears because she wasn't ready to leave or getting phone calls about temper tantrums is something 5 years ago I was not sure would ever happen again for Makenzie. It is now 2012 and Makenzie can throw a tantrum with the best of them. I am so proud of her and so thankful to my God for the healing he has brought to Makenzie's body! Being Makenzie's mommy is such a privilege and quit honestly a whole lot of fun.



Well I am now off to get my son back on track. He has now been working on his 5 whole paragraph essay for the last.....oh forget it I have lost track....... and edit my paper one last time.

Believe.... Prayer.... Works!

( a huge thanks for the pictures of Makenzie at school sent via text from her aide!)

Sunday, October 7, 2012

15 Years

Today is the day 15 years ago I became a mother.

 

My now 15 year old son started high school this year. He has friends, is playing football, as of tonight he is pulling close to a 3.0 GPA and has officially starting saving for a car. I am so proud of my boy.

I am having mixed feelings about my kids growing up. When they were born I thought about the future. I saw mom's at church with older kids and remember feeling like that day was SO far away. I carried my newborn around in his car seat all bundled up, stepped over hot wheels, bought batteries for the baby swing, but high school seemed like it was and would always be just a dream. Now it is here. The reality is, I am now the mom with older kids. I am so excited to see my son succeeding and becoming a man but at the same I am sad to think that in just 3 short years he will actually be a man and not my little boy. 

Life sure is a crazy thing!

Believe... Prayer Works!






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









Related Posts with Thumbnails