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.

Predictions

I wanted so bad to make a prediction for this new year. I stopped short of coming right out and saying it so as not to jinx myself or especially Daniel.

I would love to be able to predict so many things for him. For the new year brings new hope that maybe this year he will walk, maybe this year he will talk, maybe this year we will know better how to care for our son.

In so many ways I have always thought of the new year as a new promise. A fresh start. Now we can wipe the slate clean and start over.

However, in Daniel's case I realize that it is a process and a continuation and in the new year we will see changes and improvement in all areas of growth, but that no one year will define his progress.

For Daniel and for all of us, it is the culmination of what has come before that sets the stage for what is to come.

2010 will be a good year, but it will be the same type of year with ups and downs, highs and lows, happiness and sadness, but most importantly a tremendous amount of love.

Running Dreams

I have dreams and I know that Jason does as well as everyone else in my family. I have dreams of Daniel running.

It's almost funny because even in my dreams I remind myself that Daniel can't even walk let alone run, but in my dreams he runs! He runs fast too. I always find myself explaining to whoever is there with me in the dream that he doesn't even walk! I tell them that he just runs but doesn't put it all together and realize that he can do both. It always seems to me to be so real and true and even second nature for him to run in my dream.

When I wake up I am often confused and have to remind myself of the reality of the situation. Often I can shrug it off and just move on, but there are some times when I just become very sad.

I just want one of my dreams to come true someday, just one.

Thanksgiving Day

I am thankful for so many things this year.

First, I am thankful for this Thanksgiving especially, because for the first time in a few years I am spending Thanksgiving with my family and we are all healthy!

Next, I am so thankful for my children who are both healthy and happy and simply wonderful!

I am also very thankful for my wonderful husband who, while being the very best husband a woman could ever ask for, he is the most wonderful and caring father my children or any child could ever have.

I am so thankful for my parents, they are just the best parents with their love, support, generosity and my children benefit from them every day.

I am thankful for my brother who, even though he lives far away, is still my very best friend and major supporter.

Finally, I am thankful for all the people in our lives: In-laws, extended family, close friends. Without all of you we would not be here.

In my heart of hearts I truly believe that it is the people you surround yourself with who get you through the day.

Happy Thanksgiving everyone!