Faith's Mom's Blog

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

Oh boy! These last two mornings have been tough ones as far as Faith getting ready for school. Everyone seems sort of perplexed by her behavior. She cries and screams and throws a fit as soon as I start getting her dressed for school. She tells me repeatedly to "Stop it!" I seriously wonder what the neighbors think during all of this. At some point she does calm down but why does she even do it in the first place? Does she seriously think that by throwing a fit we're not going to send her to school? Both her morning and afternoon aides say that when she is in the classroom she is a little tense and her arms are bent up stiff like she can't totally relax. I'm hoping this will get better as she gets more used to her new classroom. Despite her bits of anxiety, her feedings are going well at school for which I am very grateful. Last year we kept having episodes of gagging and throwing up and we ended up seeing a nutritionist to see if we needed to make any adjustmen

Well, just as I thought, this morning didn't go too well getting Faith ready for school. She was in tears for most of the time we were getting ready. I tried to sit with her and console her and through her tears she said, "I'm not ready for school." When I asked her why she replied through even more tears, "I want to stay home with you." It was sad and endearing at the same time. I'm not sure what finally brought her out of her tears but she did calm down as I was fixing her hair. Then when her dad tried to talk to her she told him she was busy getting ready. Rob and I both got to walk her to school and since her morning aide was nowhere to be seen, I took her downstairs to her classroom. On the way, we ran into several teachers who gave Faith a very warm welcome back to school. She received many compliments on her outfit and her pretty hair. She was smiling and talking and I knew at that point she was going to be fine. At home, I kept watching t

Tomorrow is the big day - Faith officially becomes a 2nd grader. We have been spending the last couple of weeks buying school supplies, shopping for school clothes and having fun driving the van around. Then yesterday to help her get emotionally ready for school we read the list of kids in her class and had a little pretend school session at home - of course she wanted to be the teacher! She does say that when she grows up she wants to be a teacher. She definitely has the giving instructions part down. This morning I agreed to help volunteer at one of the booths for open house so parents could come in and pay lunch money, pay PTO dues, buy spirit wear - things like that. Faith was very patient with me at the booth and it helped when people came over to visit. After we were done with that, we ventured downstairs to meet her teacher and see her classroom. I was thankful that there was an instant connection between Faith and her new teacher. Faith ended up telling her, "You're

Assistive technology helps students succeed in the classroom. There are many types of assistive technology to help students with different special needs. In the photo to the left, assistive technology called interactive switches allow Faith to drive her power chair and operate her computer at school. Read more by going to Assistive Technology Helps Students with Disabilities.

Just the other day we had a very special visit from our friends Kimberly and Matt. Kimberly used to do respite care for us and worked with Faith for about 3 1/2 years. They developed a very special relationship. Kimberly is the one who helped Faith make a very special gift for us - our " I love you stinky face " ceramic mug. It was also Kimberly who made Faith think her last name was spelled R-O-C-K-S because they would practice spelling Faith Rocks! While we were happy for Kimberly's fiance finding a job in her home state of Kansas last summer, we were very sad to see her go. After moving back to Kansas, Kimberly found her dream job in early childhood education and she and Matt got married. Throughout the year we have kept in contact with them through SKYPE. Sometimes our SKYPE sessions are over an hour long and Faith and Kimberly found a way to play hide and seek over the computer. And then when its time to say goodbye, Faith cries and tells me how much she misses K

All week long, Medcenter One has been holding their pediatric therapy sessions a handicapped-accessible park called Magical Moments. Of course when this was being planned, the weather was going to be a key factor. It turned out to be a beautiful week - perfect for playing in the park .  Yesterday, Faith got in her gait trainer like any normal physical therapy session but this time instead of walking down a hallway, she got to walk up some ramps that eventually led to some slides. It was harder than normal because these ramps were at a slight incline and she has never walked uphill before. She worked so hard and as a reward she got to go down the green slide with her physical therapist. She was all smiles! Faith giving it all she's got Keep going Faith! Faith made it to the slide! Going down the slide! When Rob and I lived on 7th street, we used to take Faith to this park quite a bit because of the special wheelchair swing it had. The swing is now new and improv

Have you ever experienced a time in your life when you were flying high full of joy one day then the next something comes along that completely bursts your bubble and you end up feeling totally deflated? This is what I call a joy buster. I had one of these real joy buster moments this past Sunday. I wanted to take our van somewhere so I could practice getting Faith in and out of it and to make sure I could do her tie-downs correctly. We were in the Healing Rooms parking lot when I got her out, showed her they were closed (she really wanted to go that day) and then upon getting back in the van discovered it wouldn't start. Thankfully, I had a cell phone with me and was able to call Rob to come and get us. On Monday we called VMI, the company who put in the electrical system to make it accessible. We thought something might have to be reset or there was a safety feature we didn't know about. VMI gave us something to try and I was full of hope. But it still wouldn't start.

Ever since finding out Faith was going to be needing some sort of wheelchair for mobility, my husband and I knew that one day we would need an accessible van. Until that time, though, we knew we would have to make-do without one. After Faith outgrew her regular car seat and needed more support, we were able to acquire an adaptive car seat called the Special Tomato using funds from GABR . Faith's first wheelchair was a pediatric wheelchair called a Kid Cart - which came apart and easily fit into the trunk of our car. But after outgrowing that, her chair became much bigger and much heavier as well. Thankfully, we were able to take the seating system off of the base and then put the seating system in the passenger seat of our car with the base in the trunk. All of this required lots of lifting. Here's how that process went: I knew after her chair was upgraded with a new back and seat, not to mention the fact that Faith just wouldn't stop getting taller, we were gettin

Ten Reasons I Prefer Wearing Contact Lenses Over Glasses

I've been trying to take Faith out for walks - to get fresh air for her and exercise for me. We have our little routine that after her first feeding in the morning we go out and about - usually just around the neighborhood. It's a nice time because its not quite so hot - even though some mornings have been humid. Last week we walked to a friend's house and while sitting on her steps visiting, we noticed the sky starting to get dark then felt sprinkles. It's a good thing she only has one step - that made it easy to get Faith quickly inside. After we got inside, it began to downpour. We ended up extending our visit longer than we had planned because it wouldn't stop raining! Rob ended up having to come get us on his lunch break. Faith really liked our long visit because she got to spend time with Molly, one of her favorite dogs  On Saturday, I was excited to finally take Faith to the zoo for the first time since it had re-opened. We really wanted to see the z

Last night after being around some very energetic kids doing activities nonstop for 2 1/2 hours, Faith's response to the whole experience was, "Well that was quite the adventure!" Faith's friend, Chloe, invited Faith to go to Vacation Bible School (VBS) with her at Century Baptist, which is Chloe's family's home church. The theme this year was PandaMania "Where God is Wild about You!" Last night's lesson was based on "God made you." Chloe and Faith During the beginning, all the kids (and there were a lot of them) gathered together in the sanctuary to sing and dance and make a lot of noise. Faith was very nervous during this part and she was telling me she was scared. Both me and Chloe tried to console her the best we could but it was just too much for Faith. I took her outside to the lobby where she proceeded to tell me she wanted to go home. I talked her into staying as I knew we would be broken down into smaller, hopefully quie

I recently read a shocking article that the country of Denmark is well on it's way to making their country Down Syndrome-free. No, it's not with miraculous medical treatment, it's through aborting babies who are tested positive for the condition. Niels Uldbjerg, a gynaecological-obstetrician and researcher in medical ethics says the number of newborns with Down Syndrome approaching zero is a "fantastic achievement." My question is where does this stop? Are they going to start aborting babies who have congenital heart defects? Spina Bifida? Cleft Palates?This eugenics way of thinking is sickening and disheartening which is I why I wanted to post something on the complete opposite end of the spectrum. Following is a letter that Sarah Palin wrote to her family and friends a few days before her son, Trig was going to be born with Down Syndrome. Sarah Palin imagined the letter to be from God. To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Frien

It has been quite the weekend. It all started Friday when Faith had her last day of summer school. She had really struggled getting to school the last two weeks because of her cold that just wouldn't go away. She also wasn't sleeping well which made things even worse. She missed three days of school last week but she made it on the last day! And the best part was that she drove her power chair home from school! Her dad was especially impressed at how great she drives. Normally, she has her seating system on a manual base and she switches over to her power base when she's in school. We are hoping to get her in her power chair more and more which will be easier for us when we get our van - for which our loan has been approved! If everything goes smoothly this week we will be getting our van by the coming weekend! On Saturday we told Faith we were going on an adventure and drove two hours to a lake resort called Indian Hills where my whole family was camping. The point of

As a way to keep things cool during the hot summer months, there are ways I like to cook without using an oven. Five of these methods include grilling, using an electric skillet, microwaving, cooking with a convection oven and using a slow cooker. To read more click here.

Shortly after arriving home from my cardiology appointment yesterday, Faith asked, "So was everything A-OK at the doctor's mommy?" Although I had been dreading the first part of my appointment - the stress test - everything really did turn out "A-OK." Doing a stress test is not fun for many reasons. First you have to take off your shirt and bra and put on one of those flimsy hospital gowns. Then they have to hook you up to like a dozen electrodes. You have to try to keep everything intact as you push your heart to it's maximum limit. And in my case, while all of this was going on, a good-looking young guy who was an intern at Mayo was in the room. Thank goodness I had two wonderful nurses who helped to keep my gown closed and wires untangled while I was on the treadmill. The first three minutes of the test weren't so bad but then they raised the incline and the treadmill sped up. Towards the end of the three minutes I started noticing my legs getti

Yesterday evening we went over to my brother and his wife's house for a barbecue. The weather was perfect, unlike today which has been filled with sporadic rain, thunder and lightning. We had a great time visiting and meeting some of those whom Todd and Barbara went to Argentina with on a missions trip. And I must say, even though I have never seen my brother cook before, he is a pro on the grill. The food was fantastic! Todd grilling up some corn on the cob. Relaxing Nicole and Barbara Sorry Chatzi - no food for you! Faith and her new friend, Alex Thanks for the food and fun!

By Lori Borgman - written May 12, 2002 recently posted on www.amazingamelia.blogspot.com My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will  roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and

Today Faith had her annual eye appointment. Her special education teacher from school came along because she had some questions regarding Faith's vision. Larissa has noticed when working on reading with Faith in school that if there is a sentence of three words like: The Big Ball Faith will just pick out the word she knows and say that one. And if she knows all three words in the sentence she just looks and  picks one but never says them in order from left to right. Also, Faith's teacher said that when there are three lines of numbers like: 1  2  3 4  5  6 7  8  9 Faith can read them if Larissa is pointing to them individually but Faith can't read the numbers from left to right without them being pointed to. She just zones in on one number and says the one that catches her attention. I am so thankful for Faith's amazing special education teacher who goes out of her way to make sure Faith reaches her fullest potential. I've noticed at home that when

A typical Wednesday afternoon for Faith... Faith getting her stretches in the pool Faith uses a wet noodle to help kick her legs behind her while working to keep her head up After all that work, it's time to relax a little Faith has come a long way since her first day in the pool when she screamed during the whole half-hour session. Rob had to get in there with her the next time then after that she was fine and started to have fun in the pool. After we get out of the pool, I hurry and get her dressed so she's ready for her physical therapy session. One of the reasons she has hydro first is so that her muscles are more relaxed enabling her to use them more effectively in physical therapy. Look how tall Faith is standing in her gait trainer! And notice her new tennis shoes! Faith in her gait trainer taking some steps Even though it is hard work, Faith really does enjoy her physical therapy sessions - as you can tell in this picture! I know one reason she en

For the past month or so, Rob and I have been trying to go through every closet, every drawer, every box, basically every thing in our apartment. This Friday all of our un-needed treasure will be up for grabs at a rummage sale we're going in on with a friend of ours. This morning, Rob realized he had forgotten to go through his clothes so he hurried into the closet and grabbed all of the hangers with dust on them. A lot of his clothes he has shrunk out of since losing weight. Wish I had that same problem! Another reason for our reorganizing frenzy is because we had to make room for Faith's new bed. While shopping for a better mattress for her, we were at TW Warehouse when we discovered the Dr. Breus Bed . Dr. Breus developed six different mattresses for different kinds of sleepers. The mattress we found for Faith is made especially for people with fibromyalgia or arthritis. Though she doesn't have either of these conditions, we figured it was worth a shot to see if it w

Ever since Faith stopped going to therapy at Medcenter last fall, I felt like we haven't been running around so much. It's actually been kind of nice. But now today I was reminded of how our days of running used to be and how we managed with only one vehicle. This morning we had to get Rob to work then Faith had an appointment at Medcenter. We had about an hour before her appointment so Faith and I hung out at the library for a little bit. She picked out a Curious George book and I found a Roxanne Henke book I haven't read yet. Then we checked out The Red Rooster cafe which is located right in the library. I enjoyed a  delicious iced mocha and Faith had what else? Ice cream! Then it was time for Faith's appointment. She had a mild meltdown in the waiting room and continued to cry when the nurse came in to get her temp.  She was nervous because she knew someone was going to be looking at her Mic-key button, which was the reason for the appointment. By the time the

Guest Post by Stephen Gallup Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families. It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me. I don’t want sympathy! First of all, from the point of view of a new author hoping to promote his book, sympathy