We are gearing up for our BIG trip! The biggest one ever! We are going across country! Since we are moving to Washington state and we live in Virginia, we will be traveling across the country. This will be an adventure for sure. Especially with two kids in tow. While we intend to try to visit some interesting sites along the way (Mount Rushmore and Yellowstone), it will still be a lot of driving. Daniel has not been such a good passenger lately. When we are out for too long or out late at night he gets very upset and almost has a fit in a way. He is so overtired or just wants to be home. It is really very sad, he cries and cries and asks for Pickles-the-cat.
We will also be staying in a lot of hotels along the way which he is not fond of since we all sleep in the same room and either Jason or I need to sleep with him. He cannot fall asleep as well and also has difficulty sleeping well. Thus so do we. It also affects Alison because when he cannot fall asleep then she cannot. It makes for a bad night and something I, for one, am not looking forward to. I mean, I know we will have fun along the way but then I just worry, worry about the nights, the sleepless nights. Then worry about the days after that. It is difficult sometimes. We really want to take Daniel everywhere but then it is very difficult to also take them everywhere and not be sad about what could have been, what vacations would be like.
Monday, June 10, 2013
Wednesday, February 20, 2013
By George I've Got It...Now What Do I Do With It??
It was a moment of epiphany.
Okay, maybe just a moment of clarity.
I am awake at this hour (4:30am) after watching Frontline. They had a story about Newtown, CT. Need I say more? In it, though they delved deep into the shooter's life and focused a while on his special needs issues. In one segment they discuss his diagnosis of Sensory Processing Disorder.
Ding Ding! I woke up my brain a bit.
I think we've mentioned on here before but Daniel hits and kicks. He doesn't do this to be mean and really it is out of his personality of a sweet sweet boy. We've been trying hard to try to help him understand that this is not behavior that we allow. Daniel does have Sensory issues, but now I realize that the hitting and kicking are a part of that!!! I know now that we were right all along--Daniel is sweet and not at all trying to be mean! YES!
Okay though...How the hell do we help him now??
Okay, maybe just a moment of clarity.
I am awake at this hour (4:30am) after watching Frontline. They had a story about Newtown, CT. Need I say more? In it, though they delved deep into the shooter's life and focused a while on his special needs issues. In one segment they discuss his diagnosis of Sensory Processing Disorder.
Ding Ding! I woke up my brain a bit.
I think we've mentioned on here before but Daniel hits and kicks. He doesn't do this to be mean and really it is out of his personality of a sweet sweet boy. We've been trying hard to try to help him understand that this is not behavior that we allow. Daniel does have Sensory issues, but now I realize that the hitting and kicking are a part of that!!! I know now that we were right all along--Daniel is sweet and not at all trying to be mean! YES!
Okay though...How the hell do we help him now??
Wednesday, January 9, 2013
Strange Things Are Happening
I think of that song from Toy Story when I think about what is going on with Daniel. He has been doing a lot more these past few weeks/months. At school he is using his hands more and more to touch and feel things that he would never have touched before due to his sensitivity. His verbal skills continue to improve each day as he learns to combine new words into sentences that actually make very good sense. The biggest change however is his strength in his legs. Over the winter break he actually climbed the stairs in our house by putting his hands on the step above and then bringing one leg up then the other leg up. Then yesterday, I got and email from his physical therapist:
"Daniel WALKED up 11 steps today at school twice! He held the railing with his right hand and my hand with his left. He did a step to gait pattern (each feet touch each step) for all but one step which he stepped through! All of this was done with minimal assistance from me. It was awesome and he was very proud! He also bumped down the flight between the two trials. We sat at the top and I had my arm wrapped around his back and one of his hands in my hands. I'd say 1, 2, 3, bump and he would slide his feet out and lower to the next step. Then I'd say, my turn and I would bump. He did all 11 steps. On the 7th step he said 1, 2, 3, bump and did it without me AND he did the last 3 steps without stopping. So sorry I didn't have the camera but I had to share!
Please know that he is still worried so he tries to sit as soon as you get to the top step....he needs to be moved to a safe place to catch his breath and receive claps and hugs."
It is starting like this in these instances that are here and there but becoming closer. I know it and can feel it in my bones that one day very soon we will be letting the world know that Daniel walked on his own. We are so proud of our little man and all he has accomplished. He just keeps chugging along and continues to inspire us all!
"Daniel WALKED up 11 steps today at school twice! He held the railing with his right hand and my hand with his left. He did a step to gait pattern (each feet touch each step) for all but one step which he stepped through! All of this was done with minimal assistance from me. It was awesome and he was very proud! He also bumped down the flight between the two trials. We sat at the top and I had my arm wrapped around his back and one of his hands in my hands. I'd say 1, 2, 3, bump and he would slide his feet out and lower to the next step. Then I'd say, my turn and I would bump. He did all 11 steps. On the 7th step he said 1, 2, 3, bump and did it without me AND he did the last 3 steps without stopping. So sorry I didn't have the camera but I had to share!
Please know that he is still worried so he tries to sit as soon as you get to the top step....he needs to be moved to a safe place to catch his breath and receive claps and hugs."
It is starting like this in these instances that are here and there but becoming closer. I know it and can feel it in my bones that one day very soon we will be letting the world know that Daniel walked on his own. We are so proud of our little man and all he has accomplished. He just keeps chugging along and continues to inspire us all!
Sunday, November 18, 2012
Where do we go from here
Being a mom of a special needs child, it is very difficult not to look at what you are missing out on. We are a normal family from the outside. Mother, Father, Daughter, Son. Mother and Father both work outside the home. We come home, make dinner, get the kids ready for bed, clean dinner dishes, put kids to bed and then soon after we fall asleep ourselves. We have a daughter who does before and after school activities. We both have meetings at work and sometimes work late or have to travel for our work or other professional interests. We save most of our family chores for the weekend when we have days off that we can devote to all the things we missed during the week...food shopping, laundry, cleaning, yard work and sometimes we have time left over for something fun.
What are those choices? We can take our daughter to a movie if one of us stays home with Daniel since he doesn't really like loud noises and would probably talk during the movie (we don't really know since we've never taken him). We can take the kids to the playground and there is a nearby special needs playground nearby that both kids love. This proves to be a nice hour to hour and a half excursion if it is a nice day--not too hot and not too cold. The children's museum is indoors but our daughter has outgrown it and for the most part Daniel is not interested.
Having Alison first spoiled us in many ways--she had/has such an imagination and was/is able to play for hours on end with just a stick and a rock. Daniel has never really been into toys until more recently but not as much. We can see him play for maybe a half hour tops but then it always comes back to TV.
Yes, the dreaded television. Daniel has become so into television and it is part our fault as well because what do you do with a boy who does not like toys much and who doesn't walk or play with other peers on the weekend? Where do we go from here? We are stuck. We have a rut so to speak. What do we do? We are not in a position to spend much money so going places that require a lot of money is not really an option. We want to get out, be active, do more with our kids but how? With Daniel how? We need help. We need something to save us from the spiral that we are going down.
What are those choices? We can take our daughter to a movie if one of us stays home with Daniel since he doesn't really like loud noises and would probably talk during the movie (we don't really know since we've never taken him). We can take the kids to the playground and there is a nearby special needs playground nearby that both kids love. This proves to be a nice hour to hour and a half excursion if it is a nice day--not too hot and not too cold. The children's museum is indoors but our daughter has outgrown it and for the most part Daniel is not interested.
Having Alison first spoiled us in many ways--she had/has such an imagination and was/is able to play for hours on end with just a stick and a rock. Daniel has never really been into toys until more recently but not as much. We can see him play for maybe a half hour tops but then it always comes back to TV.
Yes, the dreaded television. Daniel has become so into television and it is part our fault as well because what do you do with a boy who does not like toys much and who doesn't walk or play with other peers on the weekend? Where do we go from here? We are stuck. We have a rut so to speak. What do we do? We are not in a position to spend much money so going places that require a lot of money is not really an option. We want to get out, be active, do more with our kids but how? With Daniel how? We need help. We need something to save us from the spiral that we are going down.
Tuesday, October 2, 2012
More Bang for the Buck
Daniel had a dentist appointment yesterday. It is clear that in this one area my kids are not mine since they do not try to hide for several weeks at the mention of a dentist appointment. My kids actually like the dentist. This is a good thing because I am pretty certain I caused my own dentist a lot of physical pain and I don't think that needs to continue.
Daniel has been to the dentist a total of 6 times (once per year) and he keeps getting better and better. When we first took him (due to his sensitivities in his mouth) he had to be held in my lap with several assistants and the dentist all holding him down. Then while he screamed, the dentist could peak inside his mouth. Like I said, he is getting better. Yesterday had him sitting in the chair all by himself just like a big boy. The dental assistant was showing him all the equipment to make him feel more comfortable. She let him hold a bigger (and plastic) version of the mirror they put in your mouth. I was surprised and impressed when she asked Daniel if her mirror was bigger and he said, "Nooooo." Then she asked him who has the bigger mirror and right away he said, "ME!"
Waiting for the dentist took a little while but Daniel happily talked and talked and looked around the room. When the dentist came in, we decided to leave him in the exam chair and I just held his legs (so he wouldn't kick the poor man) and his hands. He didn't scream and actually opened his mouth every now and then. Enough for the dentist to take a look and do a little brushing. No Cavities!
Daniel has actually been saying for months that his, "teeth hurt." With Daniel, it is difficult to know if he really does hurt somewhere or if he just heard someone say that and is repeating it. Nevertheless, since it went on for so long we wanted to check it out. Low and behold Daniel is getting his 6 year molars in and they can push on all the other teeth and cause pain. The dentist wasn't too concerned with them right now.
I started to ask the dentist and it was interesting that he knew exactly what I was about to ask. My question: "Will there come a time...?" The dentist knew. Yes, he said there will be a time but not until we take him in and he can have "more bang for the buck." So, if his molars cause his front teeth to become crooked and then they start to develop plaque then we would take him to the hospital and the dentist could remove some baby teeth and seal the molars and straighten the front teeth and do a cleaning all under "one roof." It was interesting how he explained to me all very casually. Very much as if this happens to all children (which I know it does not). He was very matter-of-fact and just knew what I was asking and what I needed to hear--we will not put Daniel under unless we really really need to. I think he would've been a great dentist for me, I am sure he wouldn't have been upset with me when I kicked him right in the...Ah well, so we got that all checked out.
Now this morning Daniel said his eye was hurting. My response: "Oh my goodness!" His response: "Oh my goodness!"
Daniel has been to the dentist a total of 6 times (once per year) and he keeps getting better and better. When we first took him (due to his sensitivities in his mouth) he had to be held in my lap with several assistants and the dentist all holding him down. Then while he screamed, the dentist could peak inside his mouth. Like I said, he is getting better. Yesterday had him sitting in the chair all by himself just like a big boy. The dental assistant was showing him all the equipment to make him feel more comfortable. She let him hold a bigger (and plastic) version of the mirror they put in your mouth. I was surprised and impressed when she asked Daniel if her mirror was bigger and he said, "Nooooo." Then she asked him who has the bigger mirror and right away he said, "ME!"
Waiting for the dentist took a little while but Daniel happily talked and talked and looked around the room. When the dentist came in, we decided to leave him in the exam chair and I just held his legs (so he wouldn't kick the poor man) and his hands. He didn't scream and actually opened his mouth every now and then. Enough for the dentist to take a look and do a little brushing. No Cavities!
Daniel has actually been saying for months that his, "teeth hurt." With Daniel, it is difficult to know if he really does hurt somewhere or if he just heard someone say that and is repeating it. Nevertheless, since it went on for so long we wanted to check it out. Low and behold Daniel is getting his 6 year molars in and they can push on all the other teeth and cause pain. The dentist wasn't too concerned with them right now.
I started to ask the dentist and it was interesting that he knew exactly what I was about to ask. My question: "Will there come a time...?" The dentist knew. Yes, he said there will be a time but not until we take him in and he can have "more bang for the buck." So, if his molars cause his front teeth to become crooked and then they start to develop plaque then we would take him to the hospital and the dentist could remove some baby teeth and seal the molars and straighten the front teeth and do a cleaning all under "one roof." It was interesting how he explained to me all very casually. Very much as if this happens to all children (which I know it does not). He was very matter-of-fact and just knew what I was asking and what I needed to hear--we will not put Daniel under unless we really really need to. I think he would've been a great dentist for me, I am sure he wouldn't have been upset with me when I kicked him right in the...Ah well, so we got that all checked out.
Now this morning Daniel said his eye was hurting. My response: "Oh my goodness!" His response: "Oh my goodness!"
Thursday, August 23, 2012
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!
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!
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