Back to School

It's back to school time. Thomas was taken by surprise and was not happy about this change to his daily routine, which consisted of waking up when he wanted and relaxing in bed until he felt like getting out of it. It was a shock on the first morning when I had to wake him and instead of lounging in his pj's he had to get dressed and head out the door.

He broke my heart with his tears, which lasted until he saw the bus. Thankfully he loves school busses and was almost excited to see it. Once he and his stroller were on the lift heading up to the bus, he had stopped crying. When I got to the school with his personal supplies he'd need he had already arrived. His teacher said he wasn't neccesarily happy to be there, but he wasn't crying either.

Day two went a little better. I was better prepared for this morning, with a brand new book he could take with him on the bus. He cried when I got him dressed, cried when I rolled him outside, but slowly became all smiles when I pulled out that book.

When he got home I had to put him right in the car and take him to a pt/ot evaluation, but before we got there I took him to Goodwill and we bought probably 25 new-to-us books to help make the next month or two of mornings go as smoothly as day two.

Wiggling through the years...

Thomas discovered the Wiggles when he was two years old. We were visiting someone who happened to have The Wiggles playing on her tv. After that he just couldn't get enough of the fab four from down under. They have done so much to help his development and it doesn't hurt that they are fun to watch. Thomas first learned to clap by watching and imitating them as they sang "Everybody Clap". We had been working on clapping for over a year in physical therapy, and it only took the Wiggles a few weeks to get him doing it.

Now that Thomas can point, he can correctly identify each Wiggle by name and by color, as well as Wags, Dorothy, Henry, and Captain Feathersword. He loves when I help him follow along with the dance moves, and when I need a smile for a portrait I can almost guarantee one by doing a Wiggly dance.

I took Thomas to his first Wiggles concert in 2005. I learned that the Wiggles host Meet & Greets for special needs children before each show, and was lucky enough to get one for Thomas. Thomas was not in a good mood when we arrived at the venue. He was in an even worse mood as we stood in line waiting to meet the Wiggles. At that point he didn't understand where he was or what was going on. He was screaming and crying and just an overall mess. We were at the end of the line so he couldn't see the Wiggles until the very last minute.

We finally got our turn and I said to the guys "I'm so sorry, he is not in a good mood today" and of course the Wiggles were great about it. They all spoke at once to tell us it was okay. As soon as they spoke Thomas turned his head from my shoulder and stopped crying mid-scream. He was in total and complete awe. He couldn't stop staring at them long enough to even look at the camera. It was such a great moment, and one of those forever memories you know will always be cherished. Thomas was so happy that day, the entire concert was spent with a constant smile stretched across his face.

We went to a second concert that year, but didn't request a meet & greet. Thomas still had the best time.

We have since been to 3 more concerts, one per year. By the third year Thomas was so familiar with the venue that he automatically knows what we are doing when we get there. He gets so happy and wiggly in his stroller. Each year I have applied, and been approved for, a meet & greet with the Wiggles. Sometimes I feel bad about being a meet & greet hog, but when I see the joy on Thomas' face, it doesn't matter. I will do anything to put that smile on his face and that memory in his heart. As long as he loves the Wiggles, we will go to their concerts and if possible meet them before the show.

First Concert and meet & greet in 2005.
Also in the picture are my aunt and cousin.

Third Concert - 2006
with our friend "Wiggly" Jo, who makes all our concert attire.

Fourth Concert - 2007

Fifth Concert - 2008

Summer Vacation

I must say, I am enjoying my summer "vactation". Although it was kind of forced upon me with the absence of our babysitter, I have embraced the time off and been pretty productive with my time.

Thomas is enjoying have his mom home every day. Sometimes he will even work with me on learning to identify shapes. Mostly we just hang out. He loves to come back to my home office and play around while I work on web sites. Occasionally he crawls on my lap and types emails to his grandmas. I'm not sure which language he is using, but they seem to be able to interpret them pretty easily.

Meanwhile I am quite busy with my web design business. I was hired to do another site that could lead to many more, I completed a site I had in progress, and did updates to another. Now I am just waiting on my clients to send me my money. My business is in the black which is great! I won't be able to support my family with it anytime soon but it's a good start. Now that I'm home I have more time to learn some new programs that will eventually make my job easier.

So all in all losing our sitter turned out not to be so bad. I've even managed to squirrel away some money into our savings account! Go figure! I manage to save more money when I'm not working than I did when I was.

It might not be so bad...

Saturday Thomas goes for another round of botox injections. Do you know what that means? it means I managed to win against an insurance company for a change! He gets to go to the same botox doctor that he has been going to for almost two years now.

YAY!

Turns out that the insurance company is letting us go to him under the "continuity of care" clause. However I found out they actually don't have a pediatric physiatrist signed up with them, so they really had no choice. Now they are trying to recruit our guy to be one of their members. Whatever the reason, we'll take it. Such a weight has been lifted off my shoulders with this decision.

Thanks for all the prayers and positive thoughts you all have sent out for us over this situation. They are much appreciated.

By the way...

If you've read my post "Anyone know a good babysitter" then you'll understand why I am posting this link:

http://www.littleladydesign.com

It is for my web site design company that I recently started up. Granted I don't know everything there is to know about web site design, but so far all of my clients have been happy with the job I've done. If there's something I don't know how to do I research it and learn how to do it. My prices are reasonable and generally cheaper than pretty much anyone else out there.

So, this is my shameless self-promotion. If you know anyone wanting a web site of their very own, send them my way!

Anyone know a good babysitter?

Well, it seems I am on vacation for the rest of the summer. My babysitter, who was on unemployment after being laid off from her full-time job, got called back to work. She got the call yesterday that she was needed today, Friday. I too was needed at work today. Unfortunately I don't have anyone else nearby who can watch my little rugrat.

For five years I have been a stay at home mom. Mostly by choice. Before Thomas was born my hubby and I decided I would take a year off to be home with our son. When Thomas came out 8 weeks early and ended up having problems, we knew we had made the right decision. 18 months, and hundreds of appointments later, I was still a stay at home mom, only now I was the stay at home mom of a special needs child. I couldn't go back to work. For one, Thomas sometimes had appointments five days a week for months at a time. Occasionally those appointments would slow down to just one or two a week, and rarely we'd have a week with no appointments. Who wants to hire a person who needs to leave early every day or who needs every day off? No one, that's who.

Finally, five years into life with Thomas and I think I am ready to rejoin the work force. I find a job that is just a temporary position, which is a great way to test the waters and see if this will work. It's got to work. Ater five years on a single income things are getting tight. Luckily my immediate supervisor is great at being flexible with my schedule and the job works out. Even more lucky is that I found a sitter who would come to my home and watch Thomas for very little money. Before that job ended I was looking for another job. This was working out okay, right? Why not shoot for a permanent position?

I found another job working for an insurance company for which I had previously designed a web site. The owner knew about Thomas and our special circumstances and promised flexibility with my schedule. Boy, if only she had known what type of flexibility I was going to need! Less than a month later I was giving her a zero day notice. "Sorry boss, I can't come in tomorrow, or Monday, or any day actually, until after Labor Day. Sorry."

Am I the world's suckiest employee or what?

Fortunately for me, my boss is pretty awesome. She didn't bat an eye and told me my job will be waiting for me, whether I can find a sitter again for the summer, or if I have to wait until school begins in the fall. If I were her I would have told me to hit the road and not look back. I think, in part, she feels for me because of Thomas and his special needs, and because she has a son with a different set of special needs.

So now I am wondering how on earth are we parents of special needs kids supposed to make it in today's world? A boss like mine is a rare find. There are few jobs that are willing to be so flexible. Besides that, I am once again without an income. It is now the burden on my hubby's shoulders to carry this family all on his own. We just can't do it. For five years he has been carrying us as slowly our saving's has dwindled to scary little numbers, and just when I think we are finally going to be okay, life happens.

I applied for social security for Thomas. I was denied because as a family of three we have an income greater than $1300 a month. Yes people $1300 a month for a family of three, and that is pre-tax income. That is what the government thinks a family of three can survive on. I can't possibly see how a family of three can survive on that income, especially a family of three in which one is disabled which means only one of us can work. I contacted a lawyer, surely that is just a ploy by the government to try to get out of paying. Nope, the lawyer said them's the rules so tough luck sweetheart.

Am I wrong to think something is not right with that picture? I guess I should be thankful we don't meet the income requirements to qualify, instead of whining about not qualififying. But the way things are going, we'll qualify before too long. Thanks Uncle Sam.

On a completely unrelated subject, did you know the President makes $400,000 a year? I'm sure he gets free healthcare in there too, as well as his own limo, airplane, house and all the other extras at no additional cost to him. Granted, the President's job is hard, and important. But ya know what? So is mine.

I Hate Insurance Companies

I.

Hate.

Insurance.

Companies.

There, I said it. Now tell me any of you out there disagree with that comment, I would find it hard to believe. Recently my husband's employer decided to switch insurance companies. This meant I had to find a new pediatrician for Thomas and had to wait and worry if all of his specialists would be covered. Luckily they almost all are. All but one to be exact.

Unfortunately that one is the one I most wanted to keep. He is Thomas' physiatrist, in charge of managing his cerebral palsy. He is the second one we have gone to see and the only one we ever want to see again. This guy can deliver a dozen injections of botox in Thomas' legs without Thomas even shedding a single tear! He agrees with me, so far, on everything. We have the same views on treatment and on how I should let Thomas live his life.

I cannot give him up. I won't. I'll take out a loan, remortgage my house if I have to. In a world of so-so doctors who may or may not actually know what they are doing, this one is genuinely knowledgeable and up-to-date on all the latest treatment options. He travels across the globe to gain this knowledge. And now my insurance company won't cover him.

I. Hate. Insurance. Companies.

There is hope. I can possibly keep him under a "continuity of care" clause in which the insurance company will allow Thomas to continue seeing this doctor based on their history together. I'm nervous because it has been only 13 months since we found him, I don't know if that is long enough. Another loophole could be if there are no other physiatrists near enough who will accept pediatric cases. If I remember correctly there aren't any others around, except our old one who, when giving Thomas his botox injections upon which Thomas would cry his little heart out, would say "stop being a baby!" Ummm, hello?!? HE IS A BABY!

So, those of you who pray, those of you who meditate, those of you who sacrifice chickens or other livestock, please do what you must so we can keep our beloved Dr. Dabrowski!