Showing posts with label IEP. Show all posts
Showing posts with label IEP. Show all posts

Tuesday, September 11, 2012

Tuesday Tidbits - Home, Work and School

I really can't believe it is nearing the middle of September already. Time flies though when there is so much going on! It seems that once school starts our schedules go on overdrive!

I am very thankful to report that Faith is really enjoying third grade! She is back to driving her power chair at school and it is nice that her classroom is on the main floor so the only class she takes the elevator for is music. She really loves her teacher and this year she has one new instructional aide and also one new special education teacher. The special education teacher she has had since kindergarten had a baby in the spring so she is only working part-time.
Faith in her third-grade classroom
Unfortunately I was not able to attend her IEP meeting but Rob was able to go and it went pretty well. It is great to know that her principal, teachers, aides and therapists are all working together to help her accomplish her goals for the year.

They are going to focus more on learning through audio rather than visual - she has such great memorization skills when she hears something. Reading is still very challenging and she has not made a lot of progress learning visually. We won't give up on that though and are still praying she will be able to read one day!

Last week she had a doctor's appointment with her pediatrician and I was disappointed to learn that she has actually lost a couple of pounds since trying to feed her more solids and less pediasure. She is so skinny - only weighing 47 pounds. The hard part is she is so tall which makes her look even more skinny. (Part of it is genetics, I know.) Although her pediatrician is not overly worried about her weight, we are going to be trying a different type of enteral formula that contains more protein to see if that helps.

As far as work, I am going to be trying a new schedule next week so that I don't have to be there until 9:00 a.m. I can't believe I am trying this because I used to love my shift when I started work at 7:00 a.m. so I could be home at 4:00.  But I do miss seeing Faith off to school and by going in at 9:00 this will give me the opportunity to see her in the mornings plus it would give Rob the option of driving me to work if he needed the van that day. (Our Hyundai is not very reliable these days.)
Me, Rob and our Supergirl at our church picnic
Rob and I have started going to a small group study at our church (New Life) on Wednesday nights. I like to get involved in a women's Bible study in the fall but I'm so happy me and Rob are doing this together. It's is a video/book series called Relentless: The Power You Need to Never Give Up by John Bevere.

Although the church offers childcare so that couples can attend together, it is great that we have respite care available so that Faith can stay home and get ready for bed. A few other events I am looking forward to is the first Java JOY of the season and the Beth Moore simulcast at First Evangelical Free this Saturday

I know many look forward to football during this time of the year - I don't watch much NFL but I love watching the NDSU Bison football games on TV. I so wish I could go to a game at the Fargodome but the tickets are all sold out for this season. I will be cheering them on from home to win another national championship!

Saturday, February 18, 2012

Time Flies in February

It seems that the month of February always goes by so quickly. Maybe it is because January is usually the coldest month of the year and the month just crawls; then when February finally comes, spring doesn't seem so far away. This year, with the milder weather, January wasn't so bad and February is going by even faster than usual. Another factor to a fast-flying February, at least for our family, is that both mine and Rob's birthdays are in February and it is also the month Faith gets to celebrate one of her favorite holidays - Valentines Day.

Another fun time for Faith this month was having her 2nd grade program at school. She had so much fun singing along to all the songs and jingling her bell (all the kids got to take turns playing an instrument and hers was the bell) that she wanted to have another program! It was so good to see her truly relaxed and not even having a tough time with startling when people clapped. And although she herself didn't have any lines, she was saying the lines along with the other kids when it was their turn to say their lines.
Faith jingling her bell
Faith joins in the singing with some of the other 2nd graders
This month we also had a parent-teacher conference which was turned into a mini-IEP meeting with Faith's teacher, her special education teacher, her therapists and the school principal. There are still some concerns with her having the ability to read from left to right but there are more ideas to try. Some really good news we got was that before Christmas, Faith was only getting between 40 and 60 percent on her trials with sight words and numbers 1-20. During the first three weeks of January though, she was getting between 80-100 percent on the same words and numbers. She continues to do well driving her power chair and is also getting good at using her buttons for her laptop at school.

Another area she is making progress is physical therapy. In January she received botox and that, along with much prayer, has enabled Faith to take 130 steps in her gait trainer. At home, she is asking me and Rob to help her take steps. We hold her up and support her while she "walks" from the living room into the bathroom or the living room to the kitchen. She is very good at using her right leg then her left and repeating the process until she gets to where she wants to go. Although it's tough on mommy's back, it's great for Faith!

This afternoon we will be meeting two students from the University of Mary who are studying nursing/physical therapy. Faith seems excited to meet them and if she's up to it, we are going to take her curling. She was up at 6:30 this morning so we'll see what her energy level is like.

Next week, she has hip x-rays and an appointment with her physiotherapist. I'm sure the words baclofen pump will come up again but hopefully (we are praying very hard) her x-rays show her hips are stable. We will also be celebrating Daddy's birthday next week and before we know it, February will be over and a very busy Spring will be upon us!
Another one of Faith's favorite activities is doing SKYPE with our friend, Kimberly

Friday, September 2, 2011

Faith's IEP Meeting

Today Rob and I met with nine members of Faith's IEP team at school this morning. The meeting was at 8:00 a.m. so we had one of our respite care providers come get Faith ready for school and take her there, which all worked out very well.

The purpose of Faith's IEP is to set goals for her to work on throughout the school year. The whole team works together to ensure these goals are met, this includes me and Rob who work with her at home to help her attain some of these goals. I must admit that probably the hardest part of the meeting was discussing the fact that she is not making any progress with learning words and having the ability to read. I discussed this in a post from this summer after an eye appointment in which the doctor told us she is probably having trouble getting her eyes to track left to right. It is somewhat disheartening but as the doctor told us we should keep trying and finding new ways to help her eyes "attend" as they called it.

One person on Faith's IEP team is a vision specialist who works with the students at school and she gave us some great ideas on how we could get Faith to move her eyes around and focus on various objects, colors, shapes and words just to help increase her tracking abilities and to sort of train her eye muscles to track and identify in a quicker manner. We also decided to do more with Faith from an auditory standpoint. Some students with cerebral palsy do not have the ability to read so they do everything through auditory input as opposed to visual input. I do continue to have hope though that Faith will be able to read.

One of the more exciting things we talked about at the meeting is the assistive technology Faith is getting that will make learning much easier for her at school. She is going to be having a laptop mounted on her chair and all the books and other lessons that the other kids are working on in the classroom will be downloaded onto Faith's computer. So that for a book that the kids are reading, Faith will have that book on her computer and will be able to turn the pages by using her switches. These are the same switches Faith uses to drive her chair - it is amazing to me that they can connect all of this together for her!

Another exciting venture this year is that Faith will be in her power chair all day at school. This is especially nice for me because after school instead of having me push her up the hill, she'll be able to drive up the hill! She did it today and she did so good! Of course though when we are trying to leave school, she has to stop and visit along the way. It was cute because as we were heading towards our apartment, one of her aides who is also a crossing guard, was coming down from the hill so we stopped to chat. Faith was getting a little bored and ended up doing circles in her chair while she waited for us to stop talking.

All in all, the IEP went very well and I feel so blessed that Faith has such a great team to work with her. I believe if anyone can help her to achieve her goals, it is this amazing group of people. (This includes her fantastic instructional aides who help her in so many ways). I am also really impressed with Faith's teacher and I know Faith really likes her. I really believe 2nd grade is going to be her best school year yet.

Friday, December 17, 2010

Some Progress

We recently received Faith's report card of sorts called, "Annual Goals, Short-Term Objectives, and Periodic Review of Services." Which basically lets us know how Faith is doing with her therapies and special education/academics at school. These are the goals that we set up for her at the beginning of the year when we did her Individual Education Plan (IEP).
 
Getting ready for school
 I was so happy to see that in each area, she is making "some progress." In Occupational Therapy, they have been working on self-feeding. This has been a challenge for her as it involves fine motor skills. She does have some high tone in her arms so she has to work through that in order to bring the spoon directly to her mouth. Her therapist in this ares says that Faith does fatigue during this exercise but that she is really motivated to work hard.

One of our goals is for Faith to begin to read. I am so proud of her that she knows all of her letter sounds and at school they are trying to get her to recognize her first set of sight words. Faith is more auditory than visual so one thing they are doing to help her learn to read is to mount a laptop computer to her chair. The computer has all of the reading materials that her class uses which enables her to not only see the text but to hear it as well. She is then able to push her buttons to turn the pages on her own.

Another area she is working on is physical therapy which involves walking in her gait trainer and also driving her power chair. Her goal is to drive from her classroom up to the gym in as fast as time as possible, with the least amount of stops. There are a few times she has gone the whole distance without any stops! Another improvement she has made is that she no longer just drives around in circles!

Besides all of these activities, she also has speech, time in her stander, computer lab, library, music, and time in her classroom. What a busy little girl she is! No wonder she doesn't want to do anything or go anywhere when she gets home!
I am so thankful for all of the help that Faith receives at school and that each person there is doing their best to help Faith reach her fullest potential. Both Rob and I are so proud of her!

Faith lying on the floor relaxing with her iPAD

Friday, September 10, 2010

Our IEP Meeting, A Dietician and Chocolate Cake

Faith loves chocolate cake!
What a crazy week this has been. We have had many appointments and meetings this week but I'm only going to mention a few of the more important ones.

We had Faith's IEP Meeting (Individual Education Plan) which is a huge meeting involving all who work with Faith at school to ensure we are setting up proper goals for her and working with her to attain those goals. If I count correctly, there were a dozen people seated around the conference table - all who thankfully have Faith's best interests in mind.

Rob could only be there on his lunch break so I was a little nervous at first when he wasn't there because I was worried I was going to say the wrong thing or answer a question wrong or something. But thankfully when Rob showed up, my nerves settled. They all talked about standardized testing and how that really wouldn't be fair to Faith considering her physical limitations. In the end we as a team decided to for-go any type of testing and focus on helping her achieve her goals.

Throughout the meeting, I was genuinely impressed with each and every one of those members on Faith's IEP team. They all had great input and great ideas. They are a group that is high on problem-solving and will go to great lengths to make sure Faith's needs are met at school. I really couldn't ask for a better group of people and am completely confident in each of their abilities to allow Faith to achieve success at school.

I am not naive and I know this isn't always the case with special needs kids and the schools they attend. Some parents really have to fight for their child and defend their child. It is obvious in some cases that the school doesn't even want to deal with certain children or the needs of those children, which I find sad and heartbreaking. I am also thankful that Faith's school has so many resources at their disposal, which I know is not the case for every school, especially those schools in smaller towns or on the Reservation.

On another note, Faith had an appointment with a dietitian yesterday. I think Kelly really got a kick out of Faith, especially since Faith kept calling her by her first and last name. And while Kelly and I were discussing Faith's diet, Faith would interrupt and say to Kelly, "I think you need to write that down."

We decided Faith needs more fiber added to her diet to ensure she doesn't get constipated. I also found out I may have actually been feeding her too much with her 10 oz. feedings four times a day. Faith had a fast growth spurt this summer and that's probably why! The dietitian told me if they grow too quickly it could impede their physical capabilities (those with CP anyway) and cause her body to not function as it once had. Which is what we were seeing with Faith - her digestive system seemed to be not working quite as well as it once was. We also figured out exactly how much water Faith should be getting and that she could continue to eat solids as she pleases.

The dietitian was really able to break the numbers down for us and figure out exactly how many calories and grams of fiber, etc. Faith needs for her body to function as optimally as possible.

Finally, I am giving the recipe for my crockpot chocolate cake that I had mentioned on Facebook and had many interested inquiries about it. Hope you enjoy it as much as we did!

Ingredients
18 1/2 oz. pkg. chocolate cake mix
3.9 oz. pkg. instant chocolate pudding mix
6 oz. pkg. semi-sweet chocolate chips
2 c. sour cream
1 c. water
1/2 c. oil
4 eggs, beaten
Ice cream or whipped topping

Mix all ingredients well; pour into a greased slow cooker. Cover and cook on low for 6-8 hours. Serve warm, topped with vanilla ice cream or whipped topping.

Friday, September 18, 2009

Questions from Kindergarteners


When I pick Faith up at kindergarten she is full of excitement wanting to share all that she did at school. And then when Dad comes home from work she relates to him everything she shared with me. Both Rob and I love to hear about Faith's time at school but we noticed something. She talks a lot about the adults - her teacher, her teacher's aid, her therapists, her special ed teacher - not much about her classmates though. Recently at Faith's IEP (Individual Education Plan) meeting at school Rob voiced this concern.

We know that Faith is more comfortable with adults. She has seen therapists since she was six months old. It took her a long time to warm up to her preschool classmates. Even after she warmed up to them, their sudden noises and movements would cause her to startle. Adults are more predictable to her than other kids and predictable for her is comfortable.

At kindergarten Faith is around 18 other kids which causes her to proceed with caution. Her teacher assured us that it would take time for Faith to get used to them and for Faith's classmates to figure out how to relate to her. She said there are already signs that a few of the kids want to be her friend because they are her special helpers.

Yesterday I accompanied Faith on a class field trip to the pumpkin patch. Two of the little girls thought it would be quite something if they were able to push Faith around in her chair. While they were pushing her they began asking questions. "Are you Faith's mom?" "How did you have her?" "Was she in your tummy?"

Later during the day, it was time to give Faith a feeding using her feeding pump. The kids around us were a bit wide-eyed wondering what we were doing. They fired more questions. "What are you doing?" "What's this tube for?" "How does that get in her tummy?" "What does that stuff taste like?" "Does that hurt her?"

Along with trying to answer their questions in a way that they would understand I also showed them Faith's Mickey Button that her feeding tube was attached to. I think it was hard for them to comprehend but it was obvious they wanted to understand. One little girl asked how that button got there and I said a doctor had to do a little surgery. She replied, "I didn't know kids had to have surgery."

The questions went on and on. "What are those things on her feet?" (Orthotics). "How do you dress her if she can't stand up?" "How does she sleep?" "How does she go potty?"

I was encouraged by their curiosity. I believe they really did want to get to know Faith better and in order for that to happen they wanted to understand. I'm hoping that as her classmates ask more questions and get to know her more, Faith will be more comfortable around them and vice versa. I think we're off to a good start.