Now he is six

Daniel turned six years old yesterday. It is so hard for me to believe that six years have gone by. We are so lucky to have our little man. He is such a happy-go-lucky kid and LOVES, LOVES, LOVES to be around people.

Daniel actually doesn't get the whole birthday thing in it's entirety. I know he loves the cake and I know he enjoys the attention from the people around him but as for presents--he could care less and the whole candles on the cake thing is lost to him. It is okay though because I don't think his sister has any problem being the one to open all of the presents.

It is really something as simple as a birthday to bring it to reality how very different Daniel is from other kids. Given the choice he would've picked just singing and hanging out with grandma and papa and his friends versus opening a bunch of presents/playing with presents or even acknowledging it is his birthday. I actually do not think he has fully pieced together yet, what a birthday really is. It is okay though, we celebrate the day no matter what because that was the day that our little bald headed baby boy came into our lives.

We had no idea then when he was born or even several months after, that he would become a very special child, though I have to say I think he was always special. He made our family complete back then and continues to do so every day. He turned six and I am reminded of this poem by A.A. Milne:

When I was One,
I had just begun.
When I was Two,
I was nearly new.
When I was Three
I was hardly me.
When I was Four,
I was not much more.
When I was Five, I was just alive.
But now I am Six, I'm as clever as clever,
So I think I'll be six now for ever and ever.

Thinking of this poem reminds me of something else A.A. Milne wrote that I really think pertains to both my kids as they have just started school as well. My daughter should have this quote written down everywhere she goes but more than that, my kids need to believe it--as really all kids should:

"Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think."

Happy Birthday Daniel! Happy First Week of School Kids! Love you both so much!

On the road again

We just got back from a wonderful 2 week vacation to San Diego, CA and Disneyland. We had a blast and are all very tired now. As always, traveling with Daniel is an adventure.

We had decided long ago that we would not let Daniel's disability get in the way of him experiencing everything that we experience. It is still very surprising to me how people with disabilities are treated. Sometimes very good and sometimes very bad. It is very clear that many people are not at all thoughtful when it comes to someone who is disabled. It may be even more difficult for us with Daniel as he has a wheelchair that does look very much like a stroller, but it does say wheelchair and it does have a wheelchair tag on it so there really should be no excuse. What bothers me most are the people who are supposedly "in-charge" that do not have the experience.

The good places are the places that train their employees and have a reputation for being accessible to all individuals. Sea World, Disneyland, and the San Diego Zoo are all good places. For the most part all of these places did well. It is impossible to have it right across the board so there were some areas that need improvement. In many of the lines at Disneyland and Sea World waiting for the rides there is a separate entrance for wheelchair accessible individuals. Sometimes the wait would be even longer than the regular line. Many times it felt as though we were being ignored, as though we were not even there. Disneyland has a newer park called California Adventure and in my opinion it is this park where they have really started to incorporate the disabled person. In California Adventure there are hardly any (if at all) rides where you go in a separate entrance. In all the rides we went on you would go in the regular lines and the queue was big enough to accommodate wheelchairs.

Of course Mother Nature couldn't really control the National Parks so that kind of goes without saying. Sea World was another one that had a separate entrance however, there weren't too many rides to contend with in Sea World, mostly shows and exhibits.

Despite having to wait longer at times or having to split up at certain rides, we had a great time. The only real bad thing that left a bad taste in my mouth was our flight home. We left San Diego at 5:15 in the morning to get to the airport by 5:30am for a 7:00am flight. Of course the line to check our bags was so long it took a good half hour to get through and then--then, the line for the security check snaked around two or three times. We kept waiting in this line as they pulled those people whose flights were boarding. As we got closer to getting checked a lady said that I should take Daniel and his wheelchair to the exit. Well, that was the first time anyone said that AND then our flight was boarding so we quickly got out of the line and we took off our shoes and what not but YES, that one woman was correct, I did need to go to the exit line with Daniel. But first I had to go up to the scanner and they asked me, "Can he walk?" Of course all I want to say is: "Why yes, but I felt like buying this $1000 wheelchair anyway!" I did not say that and we were told to go all the way across the room and wait. Yes, our plane continued to board. Daniel and I waited, while a male (for Daniel) and female (for me) TSA officer were rounded up. They came and slowly took us to a different area where my husband and daughter were not allowed to talk to me or to even hand me my shoes! We waited in this area while the agents had to explain everything to Daniel--DANIEL and me before they touched him. Poor boy had no idea. They needed to swab his wheelchair and his shoe inserts! Then they patted me down and patted Daniel down. I do not know how long this lasted (felt like several years). I told Jason and Alison to go to the plane to get seats (maybe two and two), but without his whole party, they wouldn't let him on! Finally, after the agents tried to make small talk, we were allowed to go to the gate. Daniel and I ran and we were let on the overly full plane. Daniel and I luckily found two seats together with Alison in the row behind us and Jason ended up somewhere else and finally was able to sit in the 3rd seat after we were in the air. Quite the adventure!

I write about this not to get anyone in trouble but to hopefully open the eyes of some people. Traveling is difficult in and of itself. Add to that two children and then add a disabled child and you have even more to think about. It was interesting though that after our flight home was over and we were waiting on the plane to get off (because we were in the way back), a gentleman commented that our son did well on the plane and said that it gets better. I quickly told him that Daniel was Developmentally Delayed and he said that he has twins that are delayed. One parent to another who completely, without any verbal conversation--just knew.

An update

It has been a while since we have written and that is only because life with 2 children and working is pretty busy--as many of you reading this already know. Daniel is doing really really well and there just hasn't been much to report on. He continues to walk in his walker (mostly at school) and he continues to talk and talk and talk. He has some issues still with hitting but we are working on it. For the most part he is a very sweet little boy.

We recently got approved for Medicaid which was a process and one in which will continue to be a process. With Medicaid, we can actually get outside help with Daniel. My parents continue to take very good care of him, but as he gets bigger it is becoming harder and harder for them and for me to lift him up. Hopefully the person that we hire will be able to help with that and with other things as well.

Something we want to try to do with Daniel this summer is potty train him. We don't know if it will work but we figure we should try. Our plan is to just put him on the potty every half hour to begin with then gradually stretch that until we have him on a good schedule. If anyone has any other ideas then please do not hesitate to let us know. It should be an interesting summer.

We are hopeful that one day soon Daniel will learn to stand on his own and walk on his own. Every day he gets stronger and stronger and since no one has ever said that he will never walk on his own, all we can do is wait. He will, we all feel it. We all feel that Daniel will catch up to most things, but on his own time. It is difficult each and every day for me to see him and think of what he could be doing. Daniel makes it easy for all of us because he is happy and a joy to be with and he doesn't realize what is different nor does he feel separate from others--although we really don't know that for sure.

We can only look ahead to a future that will one day have him walking on his own and going to the bathroom on his own. No matter how difficult a dream that may seem--we have to dream right?

The Theater

I remember the first movie I saw (at least I think I do), it was "Annie." I remember the first movie that Alison saw was "Curious George." I am sure Jason would remember his first movie as well if I asked him.

I also have fond memories of the theater. I was in theater camp as a teenager and then worked as an usher and backstage for the theater near where I grew up. When I was in middle school and high school choir we would go to New York City to see a show at the end of the year. I love live theater and that was mostly why we went there this past summer and I took Alison to see a show. Jason and I both enjoy plays and musicals and want to share that love with both our children.

Daniel does not have a first movie yet. There have been one or two movies that we considered taking him but it is very difficult to think that through. First, if he cannot sit through the movie then that would mean one of us would need to leave before the movie is over. Then, we need to consider that he talks and repeats and sometimes yells out so he may cause a disruption. Finally, there is just no telling if he will really care about the movie or get anything out of it. It would be great to take him to the movies or the theater and maybe when he gets older that will be doable but what if it isn't? We would like to do things as a family as much as possible and not being able to take him along to see a movie or go to a show is somewhat heartbreaking to me.

When I first got accepted to Drexel University and got awarded a partial academic scholarship as well, I really thought that at any day "they" would come and take it away from me. I figured that at some point people would realize that they made a mistake, gave the award to the wrong person, by no means did I deserve it.

Fast forward some (okay many) number of years and this is the same way I feel about being a mom. I feel that at some point "they" are going to come along and say--"oops, we made a mistake you are not a good enough mom and don't deserve this." I don't know what makes me think this really. I try to be the best mom that I can possibly be to my kids and yet I always feel that I fall short, that I could be doing more and that some other mom would be better at raising them then me. I know (logically) that I am doing the best, but I can't help think this way. I wonder if other moms feel this way (parent of a child with disabilities or not)?