October 2010 Update

Hi all,

We hope everyone has a safe and fun Halloween tomorrow!

We're enjoying a fun Halloween weekend as a family. Dinner last night and a football game, Halloween/scary movies tonight and tomorrow, of course, trick-or-treating for Isabella. Nick, of course, declared he was "too old" for trick-or-treating back in Jr. High. Bella is going to be a candy-corn (good) witch this year and our family is coming over too. The kids want a special dinner of Philly steak sandwiches and creamy squash soup tomorrow and I'm going to attempt these "chocolate-orange" Halloween cupcakes I saw on Food Network. I am NOT a master chef by any means, but I can follow a recipe. My food never "looks" beautiful, because I don't have the patience to make it "perfect" but it still tastes good enough for my family:) We're getting over bouts of strep throat and other viruses and I think everyone is pretty healthy for the moment.

The major update is that Nick starts wrestling at school this coming week. For anyone who doesn't know, he did this for the first time last year and it was a great experience overall for him. We have a lot of blog posts, newspaper articles, etc. from this time last year telling all about it.

Also, FINALLY, Nick is starting the driving portion of his drivers ed training. He took the classroom portion and aced it in the summer but we had to go through all kinds of "hoops" and extra steps to get this part arranged, starting with getting approval from the State of Ohio which required an evaluation and doctor's signature. The doctor, who has known Nick for 17 years was "hesitant" to sign it even though he's been doing great driving and has had a special evaluation with an OT, etc. She finally did sign it after some time passed and the State approved it. We contracted with a special driving instructor from St. Mary's, Ohio who will actually come to our home fore the instruction starting this Monday and several days after. He is bringing a vehicle with hand controls, etc. This is all VERY expensive and we were able to get some assistance from the State for the cost for once, thanks to the Bridges to Transition Program. (thank you!) Once this is all completed, Nick has to be evaluated AGAIN before the doctor will sign AGAIN and the State will allow him to take the test to get his license. (we got a letter from the State this week telling us this!) Then we have to figure out how to get Nick a vehicle (easiest thing would be a van) with a lift and all of the modifications he'll need, hand-controls, a special turn signal, and the lift is the most expensive thing. All together, about $12000 worth of modifications we priced. When we found that out, we just put that task aside given the time we had to put into getting the driving, and the time we're putting now into college planning. I guess we'll deal with that later when we have to! One (or two) things at a time:)

I have to say, the past 17 years have been a roller coaster of emotions for us and we've been doing pretty well for awhile now. I admit that I just push the emotions aside to live our daily lives and this has worked well for me I guess. With this driving situation and all of the extra steps we have to take for college visits and disability services at college ,this has left Greg and I feeling VERY frustrated. To add to that, I just feel like I could cry and I get angry about these things with Nick lately. It's not helpful, I know, but I haven't been able to control it well and I know it won't change the situation. It's not like we didn't know Nick's situation before all of this. It's just that it is hitting us again, with all of the stuff going on this year. Anger, frustration, envy of others not in our situation ( I hate that one especially!), and sadness on one side. Pride, happiness (for Nick), excitement (for Nick) on the other side. Bittersweet is a word I use often and it describes this range of emotions we're feeling perfectly.

We are so happy on one hand that we are HERE, Nick's senior year, getting ready for graduation, etc. WOW, that's emotional thinking back when we were told, asked, etc. by school professionals even in Jr. High if this would be possible. Then, the part I hate to talk about..........because I am ashamed of this, it is VERY hard for us (mostly me) to see our friends and family who have kids Nick's age and they are starting to drive, apply for colleges, etc. and it seems so simple, they just "do it", no extra steps, and I'm so happy for them, but it is hard when I think about how hard it has been for Nick. Like Greg said, he wonders how many parents take their kid into the BMV to get their license and are told they can't do it without a doctor's approval, even though they got their temps, etc. How many parents have to pay thousands of dollars to make that happen? Of course, we don't want any of our friends and families to have to experience this! It's NOT really about them. It's about us realizing, once again, the reality of the situation and I don't know why it still hurts so much! People keep asking Nick at school if he's applied, etc. for college. We are thinking, of course, of the fact that just to visit, we are making arrangements with the disability services departments to see if they can provide the accommodations Nick needs and are all of the buildings wheelchair accessible, the cost of these accommodations, ETC. Everything just seems to take Nick/us longer because of these extra steps. I always tell Nick not to compare himself with others and this is not a race, but I get so upset when people ask us if we've done this or that yet. I know it seems like I'm overly sensitive. Maybe I am, but this is what we're feeling and of course, we'll get through it together. We always do. We just feel as sad sometimes lately as we did when Nick was younger. We didn't expect that at all!
By the way, we don't want our friends and family NOT to share their great news with us, we love it. As I said, it is not about you! It's about us and Nick and our own grief, which apparently can pop up for years, as we're finding out.

One final note, Bella got all A's and Nick got all A's and a B+ on their grade cards this week. Needless to say, we're very proud of them:) Nick's GPA is 3.72 so far. We think that is amazing and shows how hard he's worked with all of the extra challenges he's had to overcome. Yeah Bella and Nick!:)

Blessings:)
Amy