Faith's Mom's Blog

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