Whatif

When I was a kid, the poem 'Whatif' by Shel Silverstein was one of my favorites. I felt connected to it in a lot of ways. Today I feel as though I could write a different version:

Last night while I lay in bed,
I couldn't sleep because of the Whatifs floating around in my head.
Whatif you were able to walk?
Whatif you were able to talk and have a conversation,
Whatif you were normal and moved without reservation?
Whatif you ran around and bugged your sister?
Whatif you got into things and destroyed items, mister?
Whatif you were able to tell us all what you were feeling?
Whatif you could get into your own bed in the evenings?
Whatif you were free to roam around on your own?
Whatif you were a normal 4 year old standing on your own?
Whatif you could understand everything I say?
Whatif other kids your age included you in their play?
Whatif you didn't need a wheelchair for transportation?
Whatif you go off and do your own exploration?
Everything seems so good and then the Whatifs come and
ruin my mood.

The things he says

Daniel has been talking up a storm and is very understandable and is also trying to repeat everything you say. He has his own little dictionary of words that he has accumulated and he tries to say all of the words he knows in one day--sometimes even at one time.

He loves singing too and loves it when we sing to him, sometimes it can be the same song sung over and over and over again. He really likes Dora, as in Dora the Explorer. Yeah, he is actually in awe of her and really loves to listen to the opening song. He is also very fond of Elmo and the Elmo's World opening song and after you sing it to him he will start it up for you saying, "La, La, La." He doesn't mind complimenting you after you sing either by saying, "good singing."

He is very good at listening to a song once or twice and trying to repeat it after that, for example the dreidel song he heard once or twice and now says, "I made it out of clay." He has also caught on to asking for what he wants by using his words such as, "Iwantjuiceplease." Honestly the way I wrote it is the way it sounds.

He has really come a long way in his communication and we are very happy about this because it is so nice to hear his voice and also hear what he has to say. For such a long time he didn't have the voice that he has now and it is so sweet.

He has been doing very well in preschool and we get good reports all the time. He loves going to school and he learns so much! We do keep waiting for him to walk but that could be never or it could be tomorrow. He is really close to standing for a second without holding on and he will "walk" with assistance and sometimes really well too. We will just have to keep working with him and take it one day at a time.

I thought I would write though and keep you all updated on the progress he has made just in the past few months with his speech. We are so proud of him and we know that he is very happy to be talking to us as well.

1 video ≈ 1,000 words

Though our posts have been infrequent, Daniel continues to make strides. This brief clip from this morning's field trip to the pumpkin patch, provides a great example of what our boy is able to do.

So Simple

Daniel has being doing great! He has adapted to a full day at school really well although he seems to refuse to take the naps that are apart of his preschool curriculum. Ah well, his teacher decided it was best to keep him bust instead. I received a call the other day from his speech therapist who said in one word: "Wow." She was amazed at all the words he is saying now. He will pretty much try to repeat anything you say to him. Not all things sound exactly like the real thing but he is getting very close. For example, he is really into Dora these days and he like to repeat the line they use for Swiper the Fox. Instead of "Swiper no swiping," and "Oh man," Daniel says: "No wiping," and "Ohman." Very close. We are so proud of him and he loves to talk and get attention and sing even. It is so great to hear his voice. Now we just need to work on getting him to communicate his wants and needs and then we will be golden.

We went to Sunday school with Alison today for a family celebration. I wheeled Daniel into the social hall where all the kids were working on crafts. A boy (about Alison's age) walked up to me, seeing Daniel in his wheelchair and asked, "what happened." I leaned down to talk to him and explained that even though Daniel is four, that he still hasn't learned how to walk or crawl just yet. The boy paused and thought about this for a minute and then said, "I'll teach him." Jason then took Daniel out of his wheelchair and the little boy (who had really never met Daniel before) held Daniel's hand while Jason held his waist and they walked Daniel around a little. I thought it was the sweetest thing and I realized that in this boys mind, the fact that I said that Daniel hadn't learned to walk yet made him think that all he needed to do was teach him. He was so sure of this. I found it very endearing and just so simple. Honestly, if only it were so simple.

Four

Yesterday you turned four years old. It amazes me the little man you are turning into.

Although my ultimate wish for you did not come true this year (for you to walk), you are demonstrating so much in other ways.

You are becoming quite the talker and will try very hard to repeat just about anything and everything you hear. You got the term happy birthday down, exclaiming to everyone who would listen: "Appy Bithday!" You try to say neighborhood and really come close with, "Neimo." It is exciting how you want so bad to communicate with us. You are getting there really.

You sing too, which is my most favorite thing. At first it was just a word here and there when we sang the rest but lately you carry the tune and string some of the words together. I really like listening to your lovely voice and think that once you get all the words down, you could be a great singer!

I love watching you these days, you are interested in exploring your world much more than you have ever been. This can be good and bad considering the fact that you really don't mind checking out EVERYTHING. I like to watch you play with toys and you've even begun to pretend play by picking up the sesame street telephone and holding it up to your ear and pretending to have a conversation.

Your turning four has made me very excited for the possibilities that lie ahead for the coming year. At school you are staying for the full day and I cannot wait to see how much you learn in that time. Because you turned four you are now eligible for a few of the programs that offer therapeutic horseback riding programs so we might try to see what you think of that. Again with your speech and communication exploding, I think this year will bring a real possibility of you communicating your wants and needs to us.

I do still believe you will walk, but I am not going to put a time frame on it this time. You will walk when you walk and that is just fine. You are doing just a fabulous job so go on with your little four year old self!

He couldn't ask for a better big sister

I have mentioned before that Daniel loves his big sister and it is also very clear that she loves him. It is difficult to go down that road of what ifs and try to imagine what their relationship would have been like had Daniel been born without disabilities. As hard as it is for us as parents to process, it must be a thousand times harder for his sister to process the whats and whys of Daniel's disabilities. Last night when we were sitting at dinner she gave us some insight into her thoughts: "I wouldn't want to trade my brother for anything...Even when he hits me or bites me, I know that he is exploring. He is also talking so much, even more than I've heard any other child with special needs!...When Daniel was still in your belly, I never thought that I would have a special needs brother."--Neither did we.

A special trust and How the doctor tells it

Daniel has mastered two new words and says both very well. He can now say: 'morning' and 'donut' really pronouncing the 't' sound. It is great to hear him talk. Pretty much anything you say, he will try to repeat it and he will get it right a good amount of the time.

We ordered him a walker a week ago, since we have enough money in our flexible spending account and need to use it or we will lose it. We set it up and he is getting the hang of holding on to the hand rails and standing while holding on, but he will maybe "walk" a step or two before sitting down. No matter though, it is ours and he can practice in it everyday. Before we could get reimbursed we needed to get a letter from his doctor. This letter needed to say why he needed the walker--duh, why would we buy something so expensive if he did not need it? Whatever, the letter that the pediatrician wrote was short but darn if it didn't have all the language that it needed. It was a shocker to me but I realize what it's intention was to say--he needs it dammit! It had words like: "poor prognosis," "no mobility," etc. Wow, way to be blunt doctor.

A few days ago Jason and I were talking about Daniels future. We really have no idea what the future holds for him, just like we have no idea what the future holds for his able-bodied sister as well. Guessing is not even worth it, but I suggested that we set up some sort of fund for Daniel in case something happens to us and he needs to be taken care of. I know that Daniel would be taken care of by his sister and other loving and caring family members and friends, but I hate to think that Alison or anyone else for that matter, would have to take care of him. She should not have that responsibility put on her. No doubt she would take it, (here is what she wrote in her first grade autobiography: "When I grow up I would like to be a person who helps people with special needs because my brother has special needs. I will take good care of them and find out what they need to feel better.") but if she cannot or chooses not to then I want for her to be able to live her life. I set out to investigate what exactly we were looking for (having no idea what it would be called besides a fund of money specifically for Daniel). I found out that there is something called a Special Needs Trust (or Supplemental Needs Trust). Oh yes, we will need to find a lawyer to help guide us through all the legal mumbo jumbo that comes with setting something like this up. Reading through all the information I almost got a headache! It does seem that this is what we will need for Daniel, now we just need to get it set up.