Saturday, October 27, 2007

In need of a personal assistant...

Okay, so I guess I really am a frazzled mom. Yesterday I got a letter from our state saying that I had not paid a single premium payment for Thomas' insurance last year! What?!? This must be a mistake, because how could I miss an entire YEAR of payments?!? So I went back to the old file cabinet, found all the old check books and looked through three of them that covered the time period for which I supposedly missed the payments. Sure enough, not a single payment was in there.

How did this happen? And how on Earth did we slip by with them still providing coverage? I mean, they actually paid out thousands of dollars toward his stroller co-pay ($2,000) and at least thirty days of therapy which wasn't covered by our primary insurance. I feel like such a heel. This insurance has saved us, without it we'd have to decide between orthotics, equipment, and thearpy for Thomas or our house payments. It has literally been our lifeline. We only pay $50 a month for this insurance.

So here's what happened. In 2005 the state decided they would raise the premiums by more than twice what they had been. Our premium went from $20 a month (a technical error on our local agents part, it should have been $50 apparently) to $120! But it was still well worth it for us. Sure the extra $100 hurt, but we could cover it. Then after a few months the state took pity on all of us special needs parents and lowered the rates back down to what they had been. This put us down to $50 a month, and since I had paid the $600 I owed for the year already, they told me not to make any more payments. So I didn't. Apparently I didn't make any more payments for the following year either!

How embarrassing.

Luckily I got a quick call back from the woman who sent me the letter and we have arranged for me to pay it over the next few months instead of a bulk payment of $600, which would really have put a damper on the holidays. We were both in disbelief that they had renewed my contract in spite of my lack of payment, but she said I was not the only one to have this issue with them.

So I told my husband he needs to get a raise so I can hire a secretary or a personal assistant, because obviously I am too frazzled to keep track of all this stuff on my own.

Monday, October 22, 2007

We read a book together

Long ago Thomas developed a love for books. As soon as he learned to turn the pages himself he no longer had the patience to sit and allow me to read the story to him. It has been well over a year since I have been able to sit with him and read him a book. Well, today he actually let me read him TWO books! He sat next to me for the first one, giggling and bouncing as I read and turning the pages for me when it was appropriate to do so. Toward the end he got a little antsy and wanted to turn the pages faster than I could read them, but I made him stick it out and we finished the book the right way.

Later he was upset over something so I pulled out another book and began to read. He quieted down and I pulled him onto my lap and continued reading. He turned the pages for me at all the right spots and listened quietly as the tears dried on his face. When we were done I told him what a big boy he was and how much I enjoyed reading to him.

At the beginning of October his teacher sent home with him a blank form. The form was intended to have listed all the books parent and child read together for the month of October. I knew this was one homework assignment I would fail to accomplish unless I fudged the results. I couldn't bring myself to do that though, so the list has sat on the counter, mocking me for the past 22 days. Today I get to write TWO titles on that list. Two! If I'm lucky I'll get to write even more on it tomorrow.

Persistance Pays Off


Thomas was evaluated for speech therapy today at school and the note from the teacher says that the therapist will be working with him in the classroom. So I am assuming that means he is getting speech therapy!! FINALLY!!!!!!!!!!!!!

A little background:
Thomas has been going to Early On since he was one year old. This was at the same school where he attended his first, and now his second, year of preschool. Since he turned two I have been asking, and then begging, for him to receive speech therapy. The reply I always got was that his speech level was on par with the rest of his development so he didn't qualify. HUH? That didn't make sense to me. His physical development should have nothing to do with his speech development. His motor delays were caused by his CP and poor muscle control and spasticity in his legs. Why would they even associate his speech with his ability to control his larger muscles. In my opinion because he WAS receiving occupational and physical therapy, it only made sense he should get speech too. UGH! So frustrating. But all that doesn't matter because he is getting it now! Finally!

I had asked to have him evaluated by a different speech therapist than the one who had done it previously since obviously I didn't agree with her assessment. So they had the one I had requested, plus the one who had done it prior, evaluate him together. The one I didn't want is the one who will be giving him therapy. But at least he is getting it. They are both supposed to give me suggestions on things to work on at home with him.

I am just over the moon right now!

Sunday, October 21, 2007

'Tis the Season

I know, I know, I've already whined about how hard holidays are for us special needs moms. But it is that time of year when it all gets shoved in our faces and it's sink or swim for our emotional well being. Right now there are moms on my message boards wondering what supercool new toys to get their kiddos for Christmas. As I read these posts I get to see just what Thomas is missing out on because of that evil monster that is CP. The board I visit is for children born the same month and year that Thomas was due. The toys they discuss are all the fun ones I would LOVE to get for Thomas and have him actually care, to play with them the "right" way and enjoy them. But that's not going to happen. Not this year anyway.

And the commercials, oh those damn commercials. Moms playing board games with their tykes, Hi Ho Cherry-O and Candyland, among others. Last year I bought Thomas Memory. He loves it. He takes all the cards out, stacks them, scatters them around his room, and puts them back in the box (if I'm lucky). Not exactly what I had in mind. Is it ever really what I had in mind? Not usually.

So it is without fail that, at this time of year, I sit down and count my blessings. I try to list the million and one ways Thomas is so much more fun to be a mommy to than those other kids. Yeah, he has CP, and that majorly sucks, but it is what it is. Because of the CP I am more appreciative of all the little things that, to us, are not such little things. Right now I marvel at the look of pure joy on his face as he races his walker out of therapy and to the parking lot. The smiles in the pictures the school just sent home from the first few weeks there. The way he licks his fingers to turn pages in books and magazines. The joy he gets when we receive a new magazine in the mail. The way he is suddenly interacting with people, really looking at them and being social with them. How last night he flirted with a friend of mine and giggled at the silly faces she was making. And today when he lightly touched his hand to my belly and I pretended he had pushed me across the room. He giggled so hard and kept wanting to do it again and again, just like a "normal" kid.

So yes, I count my blessings and realize how good we have it. He is healthy, he is beautiful, and he is mine.

Besides, who wants to play Hi Ho Cherry-O anyway?

My Greatest Wish

I hate to put the cart before the horse, as the saying goes, but I am pretty sure that someday soon Thomas is going to clearly and meaningfully say the one word I have been waiting to hear. He is soooo close to saying it. He starts off with the "M" sound and gets the "ah" going after it, but just won't repeat it to form the word I have been dying to hear uttered from those precious lips.

Honestly I'd love to hear him say anything at all, but for his first word to be "mama" would be the absolute most wonderful thing. I have waited and waited and waited for that day, the day he speaks. I am still waiting. But I think it is coming. He is soooo close. Today he really teased me with it. Several times he would say "Ma" only to end it there. I'm fairly certain he means to say "mama" and that he knows that is me, but until I know without a doubt that is what he means I am not going to count it.

I am hoping for a true "mama" for Christmas. Thomas seems to do something spectacular just before Christmas every year. Two years ago he started to use his walker. Last year he learned to crawl. (Yeah, I know, wrong order of doing things, but we do things on 'Thomas Time' not everyday boring average people time)

So this year for Christmas I am wishing for speech. One word would be fine. Any word. I'm not picky. Just a single word so I can be reassured that he will someday be able to speak. Above all else that is the most important thing to me. A person can go through life without the ability to walk and do just fine for his or her self. But not being able to communicate in some form or another is debilitating to a person. If he can just do that, I know he will be okay.

Monday, October 8, 2007

Handicap Accessible

If you have never had an occasion arise where you were in need of a handicap accessible entrance, then you probably won't care what I have to say in this post. One of the things that has bothered me since even before Thomas was diagnosed, but even more so since he has become too heavy to carry around all the time and spends much more time in public in his stroller, is the lack of handicap accessible entrances. Sure, all the public buildings have those nifty blue stickers affixed to their doors to let us know this is where we should enter. And lucky for us I have gotten good at pulling Thomas in backwards through these doors with one hand on the stroller and one hand holding the door open. Or by using my rear end to push open the door while pulling Thomas through backwards hoping the door doesn't slam shut on him before I can yank the stroller through.

I guess I don't understand exactly how these entrances qualify as handicap accessible. Is it because there is a sticker on them? Or because there is a ramp cut into the sidewalk leading up to the door? Because for sure, the door is in no way handicap friendly. I cannot imagine Thomas, years from now sitting in a wheelchair on his own, trying to pull open one of those doors, then being able to back up enough to keep the door open while he rolls on through. Nor can I imagine him in his walker trying to accomplish the same thing without losing his balance and falling flat on his face.

What really gets me the most is when we go to his specialists offices, and they have no automatic doors. Come on now, 98% of your patients are handicapped in one way or another and yet you don't have a way for them to safely enter your office without a two man crew accompanying them.

And while I'm on my rant, which is probably making no sense at all as I ramble on and on, why can't people hold open doors for us? Is it so difficult to take five extra seconds to hold that door open for that frazzled mom who is huffing and puffing behind you trying to push her child in his stroller and scramble for the door before it slams shut either in her kid's face or on his legs? What ever happened to chivalry, or basic human kindness? I am always shocked when someone actually does hold open a door, and I'm sure I embarrass them with the mountains of gratitude and praise I heap upon them as I marvel at their kindness. But it is such a rare occurrence that I find myself wanting them to know that they have just made my day a little easier and reminded me that there are in fact a few decent human beings out there, willing to take five seconds from their lives to help out a mom like me. And to those big corporations, those doctor offices, shopping centers and anyone else, it takes more than a little blue sticker on your door to make it handicap accessible.

Sunday, October 7, 2007


Sometimes being the mom of a special needs kid can really bring a person down. Not because we don't love our kids with all of our hearts. And not because we aren't so very proud of who they are. We don't judge them by their accomplishments, by the can do's and can't do's. We just love them because they are ours and they captured our hearts from the very moment we first laid eyes on them, and most likely even before then.

However there are times when it is especially hard to be the mom of a special needs kid. Times when we have typically developing children shoved in our faces, forced into our lives, and we practically choke on their normalcy and their ability to do things our children can't.

Holidays are quite possibly the hardest times for me. And playgrounds. And birthday parties. The list goes on and on. But holidays, a time when any parent looks forward to seeing the joy on their child's face as they unwrap, dress up, sing carol's, collect candy, pull the wishbone, etc. etc. etc. What I wouldn't give to just once have my sweet Thomas pick out a valentine card to give to the little girl he thinks he is in love with. Or for him to see a commercial on TV and say "mommy, I want Santa to bring me that toy!" and then wait in anticipation, hardly able to sleep because Santa is coming and tomorrow he will find out if he did get that toy. I'd love to have him pick out a costume to wear for Halloween, hold his treat bag, shout "trick or treat" at the top of his lungs, then run off before remembering to say "thank you."

It is now October. A great time to be a kid. You get to dress up, you get to play tricks on people, you get free candy, and if you're lucky you get to eat as much of that candy as you can. Yet here we are, Thomas and I, just after our first Halloween outing of 2007. I picked out his costume. I painstakingly created a costume for his stroller too. "This year," I thought,"Will be the year we have a normal Halloween." Nobody will think Thomas is different, because the stroller will not look like a handicapped person's stroller. It'll be an accessory, not a necessity. And so I got out my needle and thread and painstakingly stitched up a cover for his stroller. We had our first outing scheduled. Everything is perfect right?

Wrong. No matter how much I strive for normalcy, I have to accept that I will never achieve it. What is normal for others may never be normal for us. When will I accept our normal? When will I lower my expectations so as to avoid disappointment? Should I? I don' think I should. Should I let go of hope, let go of the idea that at some point Thomas will enjoy these moments as much as any other child, as much as I want him too? NO! I won't accept it. We may not have those same moments as other kids and their families have. But we do have OUR special moments, OUR special memories, OUR own normal and OUR own traditions. And while I may want to celebrate things a certain way, and just when I start to feel the disappointment sink in because Thomas is not reacting or interacting the way I want him to, I am awakened to reality. The reality that Thomas may not do things the way others do, but that doesn't make it any less meaningful.

This weekend we went on our scheduled outing. Grandma and Grandpa came along. We hit the "village" and we trick-or-treated our butt's off. Mom and Grandma looking forward to all the candy they were about to acquire. Daddy and Grandpa trailing behind too embarrassed by our costumes to walk too close. And Thomas, sweet Thomas, sitting in his stroller, oblivious to the concept of trick-or-treating, yet having the best time of us all. The giggles and smiles he sends echoing through the streets make others around us stop and smile. Apparently he likes the bumpy gravel of the road, and the vibrations of the wooden sidewalks. Who cares about candy, this is a fun ride! But the best part was the carousel. Thomas loves the carousel! Around and around, faster and faster, up, down, up, down. Smiles, giggles, then full out belly laughs ringing through the building. Let's go again, and again, and again. At that moment, it is hard to look at him and remember he has CP. It is hard to remember he is not "normal." It is hard to remember that he didn't hold his bag out for the candy-givers, or shout "trick or treat", or forget to say "thank you." At this moment he is Thomas, a little boy having the time of his life on the carousel. He is Thomas, my son, reminding me to stop and enjoy the little things in life instead of worrying about the big picture. And I think to myself, "Don't worry about the can do's and can't do's. Let's just enjoy the now, this moment, this smile, this laugh, this boy on this wooden horse."

And I did.

Wednesday, October 3, 2007

He Walked

At therapy yesterday I decided to haul in Thomas' reverse Kaye walker. He hasn't used it in months due to the increased tightness in his legs. When I would have him use it he would toe walk, even in his braces, and I was so worried about his posture, not wanting him to learn to walk with bent knees on tiptoe.

But now things are different. The botox and serial casting have worked a miracle and he no longer is so tight. Now he can stand flat-footed and straighten out his legs. It truly is amazing to see the difference. Diaper changes are so easy now that his legs are easily manipulated and loosey-goosey. It's wonderful.

Which leads to yesterday and the walker. I carried it in since he had not gotten his shoes yet. Once the shoes were on it was time to cruise. At least, both therapists and mom were hoping for some cruising. Thomas was ticked because we had to take his books so he could hold on to the handles. He walked a few steps and then tried to get down and steal his books back, the little stinker. So he spent the rest of the therapy appointment crying for his books and begrudgingly working on his therapy activities.

At the end of the visit his mean ol' mama decided to make him walk out to the van. His therapists thought I was nuts, as Thomas screamed and stumbled out to the waiting room, eventually offering to carry the walker so I could carry Thomas. But apparently those ladies didn't realize that Thomas gets his stubbornness from his mama. I let them carry the walker to the door, and then I put my foot down. Slowly, screaming and crying the entire 20 feet to the van, Thomas walked, all on his own, with near perfect posture, flat feet, knees in proper position. He walked, mad at the world (but mostly at mama), each step marking an accomplishment he was oblivious to but which filled his mama's heart with pride. He walked.


Yesterday Thomas got new shoes. It doesn't sound very exciting to say it like that, but I was thrilled to go to the therapy appointment where we met up with his orthotics provider. Waiting there for Thomas were a pair of very special shoes, made specifically to fit over his AFO's (leg braces). For once we didn't have to buy shoes three sizes too big just to fit them over his braces. For once the velcro straps were extra long so that when the shoes were over his braces the velcro could actually be closed up. For once he won't be hindered in his walking endeavors by a shoe that is two inches too long and the constant fear of tripping over his own extended toes.

So yes, new shoes ARE exciting! It was like, for one perfect moment, all was right with the world. There was one less battle to fight, one less war to wage, one less weight added to this mom's shoulders. All because of a thing as simple as a pair of special shoes.