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.

Signs, signs, everywhere signs

A lot has happened in a small amount of time. We have been on vacation to Disney World, we have had Alison's dance recital, we are winding down with school and oh yes--we bought a house and moved. Crazy.

First of all Disney World was great and while Jason may take the opportunity to provide our readers with much more intricate details of characters and rides, I will provide an overview of how much we have seen Daniel grow in his communication skills in just the past few weeks. It is amazing how much Daniel is now trying to say and/or sign words. He will try almost any word that you say and he will sign and say whatever words he knows. He is also doing it very appropriately too. He even has done something he has never done before while on vacation he actually asked to eat. He signed and said the word eat when it was actually dinner time! In school Daniel was eating lunch and signed and said cookie because he knew there was a cookie to eat but it was not even in his sight! We are delighted. This is a great thing in terms of his communication as well as his ability to tell us his wants and needs.

He was great at Disney World. He enjoyed many of the rides that were in the dark and that were in the air. He really enjoyed the Dumbo ride and Jason said he asked to go up! We all had a great time. It was weird though to go to the parks with a handicap tag and once again to have a sticker on Daniel's stroller. I am glad that Disney does such a good job of recognizing people with disabilities. We were able to get on rides and into shows without having to carry Daniel for a very long time (he is a big boy). With a special needs sticker we did not have to wait the 90 minutes to see the fairies, only 30 minutes. While I appreciate all of this and know that there really is no way Daniel would have been able to wait 90 minutes, I still think how unfair it is that we have to do any of it. I would much rather be that family with my children running all around the waiting area than to be singled out and treated differently. I guess I am saying I wish more and more at those particular moments that Daniel was a normal little boy. What I would give! Ah but still we are so lucky to have both of our children and love them more than anything!

We had Daniels annual IEP meeting and things are going along very well for him in school. He loves school which is no surprise because his sister loves school too. He is doing great in his regular preschool class as well. In school he uses a Gator to help him walk and he is doing really well with it. He will have extended school for part of the summer and I know he will love that as well. We learned a few things in his IEP that we did not realize before. One was that Daniel is still having difficulties chewing. We kinda knew this already, he clearly can not handle foods that are not broken into small pieces, he also cannot have a lot of food in his mouth and his food needs to be mashed or soft, but we did not realize the extent to which Daniel is not learning the skill of chewing. It needs to be learned or he might have to eat soft foods forever. We were and still are concerned. We asked the OT what we can do and she gave us some ideas but really, how do you teach someone to chew? It is something that I never needed to do with Alison and something I really don't know about and so I am at a loss and am really worried that if we can't do this then who will? Another thing we learned was not new except for part of it--Daniel is delayed in all areas: speech, gross motor, fine motor, etc., but there is one thing Daniel can do that is so skilled in fine motor--he can put the cap back on a marker (go figure)! The last thing concerns something that Daniel does and has been doing for a while now, he will throw his head back in excitement. It looks like it could hurt but he does it whenever he is happy or excited and he never seems to have a problem with it. At school though, his teacher said she will calm him down when he does this. We did not think to ask her in the meeting but now wonder, is that something we should be doing at home as well? Is it a concern of theirs that he is doing this? We have emailed his teacher for answers.

All in all though the meeting went well with some good goals set for next year. We also learned that next year Daniel will be in school all day instead of coming home at one. This will be interesting but I know he can handle it fine the question is, can we?

Still here

We are all still here!

It has been busy, of course, but we are here. We have been trying to keep up with day to day work, school and extra activities. For the most part all is well.

We are very glad to be out of winter and into spring. It was a looooong winter. At the end of February we had a bit of an unpleasant week and weekend when Daniel got sick. It is difficult to know exactly what is wrong because Daniel still doesn't communicate his needs or wants all the time with us. I ended up taking him to the doctor the day he came home early from school in which the doctor said it was just a sore throat (not strep). The next day he spiked a fever of 104 so back to the doctor he went. By Friday of that week he had not been eating or drinking all week so the doctor admitted him to the hospital for IV fluids. It took them four sticks until they found a vein on him. Four times he had to be held down by 5 adults (yes he is that strong)! It was nerve wracking for me and for my mom and dad. I stayed with him through the night and the next day he looked 100% better and finally started eating and drinking. Poor little buddy. Jason and I were also sick that same week. Turns out I had bronchitis and I suspect Jason did as well. It was not fun.

We are much better now and thoroughly enjoying the warm weather. We have seen a tremendous increase in Daniel's communication skills these last few weeks. He is saying more words and signing appropriately. He is doing much better in verbalizing his wants and needs. He is also doing a little walking in what is called a gait trainer.

We are, as always, constantly impressed by Daniel. He is super smart, sweet and loving. He LOVES watching and playing with his sister who, likewise, LOVES to play with him.

Our two adorable children are the most loving brother and sister we've ever seen. They continue to be our pride and joy.

Feeling Sorry for Her

The other day we were driving in the car and asked Alison to give Daniel a snack. Because of his still difficulty with chewing, she knows that she needs to break off small pieces and give it to him in his hand. She is also aware that she needs to have him chew what he has in his mouth before giving him any more.

She is only 6 years old.

I feel bad for her.

Never mind that she doesn't notice anything wrong with that. He is her little brother and she is the big sister who, from day one, wants to help. I know all big brothers and sisters are put in charge. I know that the oldest has more responsibility, I get that. What I don't like is that she will probably never get a break from that responsibility. Unlike other older siblings whose baby brother or sister gets bigger and can eventually take care of themselves, Alison's little brother may always need her help.

Of course we'll be there and it won't all fall on her shoulders but in fact someday it might.

She gets sad too. She wonders too why her little brother doesn't walk. We try to remind her and say, "don't you remember his brain doesn't work like other children's brains." How can we expect this little six year old girl to understand something that we don't understand?

In the end she is six, but she has had to grow up more than she will ever know.