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)?

Future thinking

Earlier tonight, Alison asked me, "When Daniel is older, will he still have special needs?"

"He may," I said. "We hope that he'll keep getting better, but he may he still have special needs."

"I don't want him to have special needs as an adult," said Alison.

Now my mind goes into fast-forward. Does Alison envision a day when she may be tapped to be responsible for Daniel's well-being? Will adult Alison have to take care of her adult brother as if he were her own child? This is certainly something that has crossed my mind more than once.

Then Alison interrupts my brain wander: "I just don't want his kids to make fun of him."

Travels with Daniel

We went on a trip this weekend. A sort of mini vacation. We took a long train ride to New York City and stayed for 3 nights in a hotel in the city. It is a trip we have been anticipating for a long time. We managed to do a lot in a 4 day weekend including see a Broadway show, going to the top on the Empire State Building and going to Times Square. All and all it was a great (but short) trip. There was something for everyone.

On our way back home I had the chance to reflect on the trip and how much of a challenge it was to travel with Daniel in his wheelchair.

It started at the train station to go to New York, Daniel was in his wheelchair but the train wasn't level with the platform so we needed to carry him up the stairs, then carry his chair then the luggage. That was the least of our problems. Getting out of Penn Station was difficult because there was only one elevator in the entire station (that I could determine). We searched and finally found it. That train station was nothing compared with the NYC Subway system which may or may not have an elevator (I am not sure because we did not see one). Jason had to end up carrying Daniel down the stairs, while he sat in his wheelchair. This occurred a few times. Then of course there are the Taxis and the sidewalks in NYC which are handicapped equipped but when crowded, it is difficult to push through.

I don't think I really realized the really sad thing about travelling with a child in a wheelchair until we were in the train station to come home. We needed an elevator again but the thing was that we did not know our train platform number until it came in. We asked for help and we were designated to a small area of the station which houses those individuals needing special assistance. We were passed on and given no information on where the elevators were located (seriously that is all we needed, we did not need help with our bags or anything else!). Finally when it came time to go to the platform, we were directed to an attendant who clearly wanted to be anywhere but there and he showed us that. It was horrible. Once we got down to the sold out train, our guide just found an empty spot on the train for our luggage and dropped us there. We had to sit for a while with Daniel on Jason's lap (even though we paid for a ticket for him). It all left a very bad taste in my mouth not just for our situation but especially for people with disabilities in general. There was no respect, no compassion, not even a little bit of sensitivity.

Daniel may very well learn to walk someday, but for the most part he will always have some challenges and now I know this is what he will need to deal with. For the time being we deal with it on his behalf. For the time being I will do everything in my power to change things for the better for Daniel and for all the other people with disabilities who want to travel the world.

The Special Mother

When I first became a mother I felt in over my head. I imagine that I am not the only mother to feel that way with a newborn. I wasn't sure how to care for this precious little life that was given to me. I learned, but slowly and I am in no way an expert at this parenting thing. By the time Daniel came, I can't say I was any more experienced with my 3 1/2 year old. I did not have the patience, did not feel that I was overly caring though I loved (still love) my kids dearly I would never identify myself as a Mother Teresa type (not the Mommy Dearest type either though).

My point is, I would not peg myself as the mother of a child with special needs. Not that there is a mother out there who says, "Pick me! Pick me!" for a child with special needs, it is sort of thrust upon us. I just wonder how it is decided. Would Daniel have picked me had he the choice? Does he think I am strong enough? I cannot say that I believe in a higher power with 100% certainty. I have my issues with all of that, but I recently read how a "Special Mother" is chosen and it really made sense to me:

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Sometimes, It is just Hard

This parenting thing is not for the lighthearted.

I am not complaining or anything. I love both of my children dearly and would never once want anything different than to be a mom to both of them, but let me tell you, it is not easy.

We have one special needs child, which no doubt comes with challenges and obstacles almost daily, but some days those challenges can be even more difficult to deal with.

Daniel is usually very happy and smiling and a charming little boy, but when he gets upset--he gets upset. The other day he spent the entire day with grandma and papa and when I picked him up to take him home, maybe it was a lack of a nap or the fact that he was leaving them or maybe it was because he was watching Raffi and didn't want that to end, but we got in the car and away he went. He proceeded to cry all the way home, when we got home and almost all the way up until bedtime. I picked him up at 4:30 and he doesn't go to bed until about 7:30 or 8:00pm. These times are hard. It is different then when Alison was his age and got upset because we used to tell her to use her words. With Daniel, he doesn't have very many words to use to express his feelings and so he just proceeds to scream. The other thing is that Daniel is delayed and this is actually temper tantrum behavior that we would typically see at the 2-3 year old mark even though he is 4 and a half years old. It is just hard to know how to deal with him in these situations. Distraction doesn't work, music (normally a great distraction) doesn't work and we are left trying to ignore the screaming tantrum that (if rewarded) would demonstrate that screaming is the way to get what he wants.

It isn't all about Daniel though. Those mainstream kids will sneak up on you with their own problems too. Alison has always been a very "dreamy" kind of girl. She is so very good at going into her own "world" and making up stories, but that has unfortunately gotten her into trouble. The other part is that she is a perfectionist and when things don't go exactly the way she has planned, then the whole world is going to blow up! She is also very dramatic. She came home from school crying the other day and apparently she had a bad day. The point is that we need to help her find tools to control her emotions and work through those times when she loses focus and when things are not going according to plan.

She said last night that she felt like a "special needs kid," and we told her that she is not, but just like Daniel needs a wheelchair because he cannot walk, she needs tools to help her too. It is hard.

Like I said though, both of these kids are my world and I would not trade them for anything in the whole wide world, but they both should have come with a disclaimer so that we knew what to expect. I am afraid too that this is really only the very beginning.

I am a parent in progress.