Faith's Mom's Blog

Lately I've been inundated with paperwork so that Faith can continue to receive SSI and Medicaid. Just recently I had to fill out forms to prove to the good  people at Social Security that Faith still has a disability and is still eligible to receive funds. It was a lot of paperwork considering I had to verify all of her doctor's appointments within the last 12 months and also to prove she had been seeing a physical therapist, occupational therapist and speech therapist. Faith went to the SSI office with me on Monday since she didn't have school. The little waiting room was packed but we thankfully didn't have to wait long. When we left Faith yelled out, "Bye guys!" She was pretty happy to get out of there. Most people who know Faith knows she has a slight obsession with cupcakes. She always wants cupcakes for her birthday and for Christmas we make and give out Happy Birthday Jesus Cupcakes . She has had a pair of pink cupcake pajamas and now has green one

Had it not been for the one fateful day that I had a craving for Little Caesar's pizza, I might not ever have known that Barney was coming to town. But there I was at the counter waiting for my medium pepperoni pizza when I noticed a flyer with a picture of the big purple dinosaur. He was coming live to Bismarck with his friends, BJ, Baby Bop and Riff - I couldn't wait to tell Faith. Barney and friends appear live at the Bismarck Civic Center I don't know how old Faith was when she saw Barney for the first time. A receptionist at pediatric therapy gave us a Barney VCR tape and Faith loved it. I started letting her watch Barney on PBS and then we started collecting the DVDs. All the while I couldn't believe I was letting my daughter watch Barney - me and my friends made so much fun of him when he first came out on TV. But as I watched along with Faith, I discovered all of the cute songs and some of the good things that Barney had to share.  I will admit though that

Second graders at Centennial Elementary get to enjoy a program called SPLASH that gives them a chance to go swimming once a week in September.  Instructors at the YMCA teach the kids different swimming strokes, water safety and survival skills. The kids are in the water for about one hour. Of course since Faith loves swimming I thought she would be very excited. Unfortunately though she seemed more nervous about it than anything. We skipped out on the first week but we did make it this week and she had a blast! It was hard to tell who was having more fun - Faith or her instructional aide that was with her in the pool. Faith kicking her feet up in the water Faith tries to touch the bottom Faith tries to do a back float

This past weekend we took a trip that was sort of spur of the moment. We have been wanting to take a little trip to see how we do traveling in our van so we decided to venture to - where else - Aberdeen, South Dakota. It took us a while to get out of our parking lot because we kept having to run back upstairs for things like maps, plastic bags, water, and of course Faith needed to be sure we had her personal PlayStation (PSP) so she could watch her videos and listen to her music. Since we were going to be in southern North Dakota, I wanted to go through Ashley on our way to Aberdeen. I used to live and work there so I just thought it would be kind of fun to see the little community 13 years later. We ended up missing the turn to Highway 11, and then we had to detour because of road construction which lead us to Eureka, South Dakota. Rob was thrilled because he is a big fan of the Sci-Fi TV show, Eureka , which actually takes place in Oregon but is filmed in Vancouver, British Colum

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