Driver's test - check!

At long last, Erica has passed her driver's test. No, of course she is not 16. I mean the one where she goes to Children's Hospital and proves to doctors that she can maneuver a power wheelchair through doorways and down halls without mowing down people along the way. In gleefully posting this on Facebook, one of my fellow special needs moms commented that she hates that Erica had to "prove herself" to get what she needs, but loves that she is moving forward (literally - LOL!).

I understand why they have seating clinic and the driver's test, as we have come to refer to the process. But I continue to contend that they should have some sort of driver's training class for kids who need powered mobility, just like the schools offer driver's ed. for teenagers and automobiles. They say "well you can make an appointment and borrow a chair from the vendor to practice on for a month or two." But no one ever explains to parents how to teach their kid to drive one - and certainly no one offers to teach her for you! Erica has been practicing on and off for about six years!! The latest training period has been since November, when I started sending her to school in a chair that we simply lucked into that another kid had outgrown and was collecting dust in a garage. It's old, it has lots of quirks, it was rigged piecemeal in many ways by the previous owner, but it served its purpose.

And now, the paperwork has been filled out and the long process started to get Erica her very own, custom-built, made-to-order power wheelchair. The model that we agreed upon with the vendor can actually go up and down curbs and should have adjustable height. I can't wait to see her go to town in it - or, to the playground as the case may be. ;)

I can make it work

First, a passing mention as to - OMG has it been that long since I had something to say on here?! But I won't attempt to identify the cause - it doesn't matter.

Today I had a bit of an epiphany, and it has lifted my spirits in the midst of the latest seemingly unending onslaught of precipitation in central Ohio.

Erica is in second grade, and it has taken me three years - since the dreaded transition from preschool to kindergarten began - to arrive at this realization. As I was staring at the overwhelming task of getting her safely into a full inclusion setting for kindergarten, I kept thinking how I would need a combination of luck, charm and sheer will to accomplish it. After the transition was made, and we were enjoying a wonderful year in kindergarten, I thanked my lucky stars for the outstanding principal, the supportive special ed. director, and the wise and experienced classroom teacher. Mid-year of kindergarten she got a new one-to-one aide and suddenly life got even rosier. Kids were more accepting of her and were interacting a lot more, she made great strides verbally and socially, which have continued to the present. Then I decided it was this new aide who was the key to our success. She followed E. to first grade, and again I thanked God for putting all the right people into our school life. A wonderful first grade teacher - now I could actually see how her strengths were in some ways preferable to those of the kdg. teacher. Then, bad news: the principal - a key component to the awesome team - was moving on. Sorrow. Dread. What will happen now? Well, the new principal... just as nice as the old one (the former one - she isn't old!) Not as proactive, perhaps, but I have no complaints. We survived the transition - again. Second grade teacher - amazing. Completely devoted to fostering inclusion and independence for Erica and all the kids in her class. How do I keep getting so lucky? Hmmm. Aide has back problems. Erica now weighs over 50 lbs. (a major victory for a micro preemie who never registered on the weight chart until the age of 8). Aide might be forced to look for another job if her health cannot take the transfers etc. Gloom. Despair. But then again...

Things have somehow miraculously seemed to work out thus far. Is it really divine intervention or just dumb luck? Perhaps a little bit of both, really. But what are the constants in this equation? They are: my amazing, beautiful, smart, funny, strong and wonderful KID, and... me. I am her best advocate. I am maintaining communication with all parties involved. I am reinforcing what intervention and therapy are doing. I am reading articles on reading methodology for children with neurological impairment, I am driving her to vision therapy, I am attending conferences on assistive communication. I can do this, and I will - no matter who the teacher is, no matter who the principal is, no matter who the aide is. And we will make it work. I do continue to thank God for all the wonderful people who have made school awesome for Erica thus far, but no matter what happens next - we will make it work. I know I can.

Sigh. I think I shall sleep extra well tonight.

Oh, for the magic pill...

I am an intelligent, educated individual. I like to think that I can recognize an e-mail scam and that I won't get taken by a phony website. However, like most parents who have a child with a disability, I try to stay abreast of current research and I maintain hope for a big discovery that will make a drastic difference in my daughter's life. We did try some nutritional supplements that had big promises for drastic improvements. They didn't cost so much that we had to take out a loan to buy them, and we did see a nice improvement in digestive regularity, which made it worth the money - especially when you consider the fact that we avoided medication to achieve the same results.

So when I went to a conference and heard a speaker talk about... stem cell therapies... I tried to remain skeptical, not get too hopeful. I am not a parent who jumps into things with both feet - I tend to hang back and wait until someone else tries it first. So we won't be making a trip to Mexico anytime soon. But it all sounded so reasonable, so plausible - it seemed to makes sense. It gave me hope.

I just finished watching a video segment from 60 Minutes on "21st century snake oil" in the form of stem cell therapies which promise everything, result in nothing and cost you a bundle in the bargain. So my roller coaster car is back on the down slope re. stem cell research. I do believe it holds great promise for the future - just not the near future. Granted, the network expose profiled a man who calls himself a doctor and isn't an MD. And he was preying upon folks with ALS and MS and promising a cure. And he was charging them WAY more than the doctor I heard at the conference. Still... office in CA, clinic in Mexico, a lot that sounded quite similar.

I'm going to do more research on the doctor I heard speak. I'm going to keep reading everything I find on stem cell research. I've already sent my daughter's baby teeth to a storage facility where her own stem cells have been extracted and are waiting... for the future.

There is no miracle cure. There is no magic pill. But there is always hope.

Winter Olympics (shudder)!

Well, it's that time again. Time for the winter olympics. Time for TV commentators everywhere to make jokes about curling. And time for my flashbacks.

Erica was born in Feb. 2002 - we are about to celebrate her 8th birthday! The winter olympics were under way in Salt Lake City. Peanut arrived 3 months ahead of schedule; I was listed in serious condition - no visitors - darkened room - limited phone calls; I was told going into emergency surgery that she had an 80% chance of survival... I was ecstatic as I thought when they diagnosed my HELPP syndrome that she had 0% chance at 27 wks! After her birth at a lower-than-expected birth weight for her gestation, we of course had no idea if she would live or die. I couldn't stop crying, and through it all the only thing worth watching on the TV in my hospital room was the winter olympics. I haven't tuned in to CNN Headline News since, because I think just hearing the music they play for their transitions would give me a cold chill.

Each year when her birthday rolls around, I do not dwell on the scariness of her entry to this world. Instead, I focus on the miracle that she is and how very far she has come. But, every four years when the winter olympics coincide with her birthday, the flashbacks do occur. I can almost smell the dozens of flower arrangements in my room. (I had to send some of them home because I was getting headaches from the smell!) I will tune in to olympic coverage, I'm sure, but not on Headline News, LOL!!

The light at the end of the tunnel

Well, the construction project is almost finished. It will have been a four month project, start to finish. Four months of having a rusty dumpster and a port-a-john in my driveway. Four months of having strange men, many of whom barely speak English, traipsing around and through my house and being able to let themselves in if I don't answer the door when they knock (they have all been extremely considerate, but still...). Four months of starting every conversation with my husband with a run-down of phone calls made, progress made, who was here and what they got accomplished.

It is turning out beautiful and just the way we wanted it to. The contractor keeps asking us if we want to move into the new space. Erica is excited but also hates the idea of Natalie moving into her old room, which she has stated repeatedly that she wants to do. It will be finished next week, and then the work of moving furniture and cleaning can begin.

I will post pictures when all is said and done, and we do plan to have an open house when all of the room rearranging and decorating is finished. Hmmm. Come to think of it, that list is so long it might be the annual Crawfish Boil in June when we host the open house!

Stay tuned...

Mixed feelings

Most of the time, when a family embarks on a home remodeling project, the general mood is that of excitement for the changes mixed with dread of the disruption caused by workers in your home and, of course, the cost! Yesterday a backhoe started digging a hole in the ground behind our garage. Today the digging continues, along with some sawing and other noisy pursuits. We are building a first-floor bed and bathroom for Erica. She is getting too big for us to carry up and down the stairs and our home's bedrooms are all on the second floor. We talked about moving, but we love our house, our street, our neighbors and our elementary school. And then there was the housing market - we certainly would have taken a big loss on the sale of this home if we decided to move! So... we are adding on. And, I have to say, any shred of excitement that I should be feeling is overshadowed by the fact that 1. This is costing us a LOT of money. Erica is on a Medicaid waiver, which helps us out with a lot of costs relating to her medical and therapeutic needs. And if we were on a bigger waiver (with a bigger budget, as opposed to the Level One we have) it would have paid for a lot of the specialty products needed to finish the rooms we are adding. But no waiver will pay for new construction - only adaptation of existing structures. 2. I really liked our house the way it was; it was plenty big for us already; now I'm going to have even more rooms to clean! 3. I really, really, wish that all of this weren't necessary. I don't often fall into wells of self-pity or waste time asking "why my kid?" but major upheavals like this bring it out of me.

Oh, and did I mention the girls and I all have the flu? That helps my mood, for sure!

When this is all done, it's going to be great. I have to keep telling myself that...

Pumpkinpalooza

We took the girls to a family festival that was a fundraiser for the local children's hospital NICU. They had a corn maze, pumpkin patch, hay rides, face painting, carving demonstrations, and the big hit with our little ones - the barrel train. This was at Lynd's Fruit Farm - the same location as the apple orchards of my last post (the class field trip to the apple barn). Although it was very windy and overcast, therefore much colder than we anticipated, we still had a great time. I walked alongside the barrel train as they rode, just in case Erica leaned too far to the side and started to fall out. But she never even came close - she hung on to the little "steering wheel" like a champ and she and Natalie both kept yelling "CHOO CHOO!!" the whole time and giggling away. Fall is such a great time for family fun!