Not One.....But TWO!!

Daniel started getting sick last weekend. So, he missed his therapy for the week, along with school. He wasn't sleeping well because of his stuffy nose and fever. So, Lonnie and I took shifts. He seemed to be getting better on Wednesday night and we figured we were safe for Turkey Day.

Well the day after Turkey Day, Lonnie rolled over and said, "I don't feel so good." and here begins the day with not one sick guy but TWO!!

Daniel seemed to have gotten a one day reprieve on feeling crappy, but now he seems to have the runny nose and watery eyes AGAIN. Now there is a little cough along with it. Lonnie is still if the first stages of it with the runny nose, the chills, headache and slight fever. Oh its gonna be a fun filled week ahead!

So, now the two of the guys are laying on the sofa, covered in blankets and drinking orange juice like its going outta style, and a Kleenex box close at hand. Daniel is in the projectile snot flying stage with the sneezes! Makes for interesting wall art at times!!

A Plethora of Updates

Let's see, its been a while since I updated. So I'll try to keep it brief and give you it to you in quick little points! At least I'll try too!

Last Thursday we had our first Preschool Parent/Teacher/Therapist conference. I'll admit I was very nervous about this. But all in all, it went well. They say Daniel is adapting well with one exception- Daniel is a social butterfly. That is the kind way to put it, the other way would be to say that my child is "nosey"! I like to call him "inquisitive" He is more worried about what everyone else is doing than what he should be doing! But according to his "report card" he is on track for the year.
We will be bringing in his power wheelchair at the beginning of the year and he will be working on that. Also his Pony walker - we will bring in twice a week so that he can work with that and learn to venture OUT of the classroom and out of Ms. Mills safety zone. :) Daniel doesn't like to be away from his teacher or a certain aide that is in the room!

On Friday, Lonnie and I got to have a date night. Daniel got a wish last year from Rainbow Connection in Michigan and since then we get free tickets to different events. We have been able to attend things that normally we wouldn't be able too. Sports games, The Wiggles, and different little shows. The one Lonnie & I went to with a couple friends was "Beatlemania". Lonnie loves the Beatles so he really enjoyed the time.

Daniel is also scheduled for a 23 hr. VMR EEG(video monitoring room- EEG) in the middle of December. Which means another trip to the hospital and an overnight stay. Another 45 minutes of screaming to get all the electrodes hooked up and attached to the recorder. Then another 23 hours to sit in a hospital room with Daniel not moving off the bed because the video camera has to be able to video tape him for the whole time. Another 23 hours where no one but Daniel can sleep as we have to make sure that if he has a "weird" movement or anything suspicious that might be considered a seizure we have to mash the button to mark it on the video.

ABR - I watch the other parent's blogs of their journey through ABR, who began at the same time as Daniel (October 2008) and I always feel like well if their child is making progress why isn't mine? I know don't compare your child with others. This is easier said than done. Even with all my preaching in past blogs, that I am OK with how Daniel is and how he isn't doing certain things. And I am, but it still stings and I think it always will to see other children that are younger or the same age as Daniel and they are doing things that he can't. Its not because I'm tired of doing these things for him, its because I don't want HIM to see that he is different. Anyways, back to ABR. We are continuing to do our ABR, and I will say it is a difficult thing to get all the hours in on top of everything else Daniel has going on. As I said some parents are noticing lists of things. These are the things I have noticed with Daniel. His chest seems fuller, thicker. He is using two hands a lot more. The other night while I was laying down and Daniel was kneeling beside me with his forearms on my chest he pushed himself up to straight arms. His upper body seems to be getting slightly stronger. Now are they because of ABR or is it just happening at the same time and its purely a coincidence? This I can't tell you, but I sure as heck am not going to stop what we are doing because something seems to be working. Might be slow, but still ......this is not a sprint, this is a journey. He might not reach goals as quickly as some, but he will in Daniel time. And when he does we'll all be there to cheer him on.

Went out shopping this weekend to two stores. TWO. And both places either Lonnie or I said something to someone who was staring. I mean jeez....have you people NEVER seen a child in a wheelchair? Lonnie was probably a little more tactful than I was. Go figure right?! This lady was staring at Daniel, and there was no mistaking it. I simply looked at her and said "Yep, a little boy in a wheelchair.....pretty frickin' amazing eh?!" Lonnie was about half way down the aisle behind us and he said what's the problem? I simply said the lady was nosy and that I had to explain that it was a boy in a wheelchair, and he said "oh ok". Like its typical to have to explain.
Then Lonnie saw someone staring as we were walking down the aisle and said to her "Are there any questions I can answer for you?". Now usually he'll say this and he'll just keep walking but this time we kept eye contact with the lady until she answered him. LOL She actually kind of just looked at him like Oh crap, which way can I run?!? then she answered him by shaking her head no. Needless to say, I was done shopping at that point and just felt it better we go home cause one of us would probably harm the next person who even remotely looked our way! Now why can't most people be like the guy in the grocery store who was walking towards us, saw Daniel was looking at him and he smiled, waved to Daniel and spoke directly to Daniel "How you doing big guy" and walked on passed. He obviously was raised by someone who taught him manners!!

Potty training- We get up every morning and Daniel goes pee pee on the potty. I'm kind of just getting him use to sitting there every morning. He generally wakes up dry so I know he has to go, so we sit and read a book or count our toes until he pees. I don't know about anybody else's kid, but every time Daniel pees he does a whole body shiver so I know each and every time!! During the Christmas break at school we will be doing the actual "training" as we have no therapies for that two week period and we should be home most of the time. So starting at the beginning of December we will do our hourly diaper checks and right them down in a journal. I am very excited to attempt this as I think it will be huge for Daniel.

We have been working on our eBay store. Just another little way to keep me busy and also get a little extra money to go towards Daniel's therapy expenses. So, if you would like to take a look, or send the link on to anyone else to help our that would be greatly appreciated. Custom orders are welcome, and if there are colors or certain things you'd like but don't see on there, just send me a message and we can figure it out. I'm hoping this will help with at least part of the costs for ABR in February. The link for the store (4 x 4 fabrics and more) is on the side bar also.

Daniel's therapies continue to go well. He still does 2 x a week of OT, 2x a week of PT and 2x a week of speech/augmentative. All of this on top of his ABR and his 5x a week of preschool. Busy boy!! And I want to look into hippotherapy and more swim therapy also. Might as well dream that there are endless hours in the day right?!

We seem to have a sick little boy the past couple of days. He is running a low grade fever (but fevers suck when you're epileptic) and a bit of a runny nose. Needless to say he has missed school and therapy this week. Just wish that other parents realize that when your child is sick it is BEST FOR EVERYONE to keep them home. Don't send them to school or therapy so that they then can cough and hack and sneeze all over everything including the therapist and teacher who then will pass it to the next child! Nothing is more irritating then sitting in the lobby waiting for your turn and seeing a parent hauling in their visibly sick child for therapy. WHAT ARE YOU THINKING??!!

Drinkin'

Ok I can't figure out how to get the video from the cell phone to my computer but I did get the photo.

Which really doesn't do the whole thing justice, but you get the point!!
Please note: the fingers grasping openingly the glass. Please note that TWO hands are on the glass. Please note that glass is headed for the mouth to take a sip!!!

No Room For the Weak or Meek...

I have discovered that the world of special needs is no place for someone who is weak, meek, quiet, passive or thin skinned.

It has taken me a few years to come to this full realization.
And I must admit, that I sometimes wonder if I can cut it in this world.

There are so many emotions that a parent/caregiver and the child goes through.
GUILT. UNDO PRESSURE. FALSE HOPE. UNREALISTIC EXPECTATIONS. JOY. EMOTIONAL ROLLER COASTER. FEAR. CLICKING OF THE CLOCK
When Daniel seems down, I am down. Vice Verse also. I have been down and dragging ALLOT lately, and I am FRICKIN' SICK of it. I wake up in the morning and lay there and say "OK today IS going to be a productive and good day." and when I go to bed at night I lay there and say "WTF? What did we do today? I didn't accomplish even a third of what was on the list to do."

I needed to realize that just because I didn't do EVERYTHING on the list of things to do with Daniel, that I was NOT a failure. That I am NOT letting Daniel down. I am simply human and I can only do so much. I get tired, I have medical issues, I get sick, I have other children and people in my life. I AM NOT SELFISH. I need time to just be a regular ol' mom. I don't always need to be in therapist, advocate, doctor,teacher, wonder mom mode. I need time to just chill, and Daniel needs time to be a typical 3 year old little boy. Every moment of everyday does NOT need to be crammed with some for of "treatment"/"training". I do not need to go to bed every night feeling like I failed my child.

When you are the parent of a SNK (special needs kid) you learn to stop caring about the scores on the tests, and not cry every time someone asks if your child has met the milestone for their age. Don't give a crap about what the other kids are doing, don't panic about the parent/teacher conference. Don't take it to heart when they say that he doesn't "compare" to other kids. Don't wear your heart on your sleeve.

Guess what people?? I don't want him to compare to the other 3 1/2 yr olds out there. Daniel is unique. He was unique from the day he was born. He was unique BEFORE he got all of the diagnosis that he has. And I wouldn't have him any other way. Daniel is a fighter, and damn it....his mom is going to be a fighter too. He may have to teach me some things along the way.
So far he has taught me to not be meek, don't be passive and let people walk all over you. He has taught me to love unconditionally. He has taught me patience (Lonnie stop rolling your eyes!)

He tells me with his eyes.... That he is truly happy. And that = happy mama


So I say:
Get Up and be proud, don't care what people say or do. If they are hurtful, smile at them (and smile because you know in your heart of hearts....that Karma will bite them in the ass one day!)
and smile because you know you truly have an amazing child. You teach your child on your terms, you do what you can for your child, and you love your child. You teach them right from wrong, and you teach them to treat others kindly and with respect no matter of their abilities, disabilities, race, or religion.

And with that being said, I am going to bed.........no I didn't get my whole list of things in with Daniel and I am NOT a failure to my child, and just because he might not measure up on someone else's scale, in the grand scheme of it, who the hell cares? When he's 35 yrs old, do you think anyone is going to say...."well he didn't walk unsupported until he was XX years old".

But I will tell you this...he held a glass today (with no handles) and took a drink!! AND today was the first day he held his own bottle and drank it by HIMSELF! YAW HOOOO!
and as soon as I can figure out how to get it off the cell phone and on here I will!

Another book review....

Again, my daughter got Daniel another book.

When your child gets ready to start school, or to start going somewhere new.
This would be a great book to send to school ahead of time for the teacher to read to the class, to prep them. Just so maybe it won't be so hard for your child.

This book is called: "A Very Special Critter" by Mercer Mayer

It's about a new student that is coming to school. and just because he uses a wheelchair doesn't make him different. Its a good book for the little ones to see, that just because he's in a wheelchair doesn't mean he can't do things.

I love Amazon, you can pretty much look up the book above, and when the screen populates you can see a bunch of other books that are suggested for special needs. I am all for getting people prepped before hand, so that Daniel or me for the matter don't have to deal with stares. Of course there will always be questions, and I don't mind questions most of the time. Unless of course you're looking down your nose at us!!

So, again Caitlin.....thanks for finding us another winner. We're waiting patiently for the next new book!!!!

Nap time?

I would have to be hard pressed to figure out something I enjoy more than the few minutes before Daniel goes down for his nap/bedtime. Its a hard feeling to describe but I will do my best. There is a process to getting Daniel to take a nap. Sometimes its a quick process and sometimes its a bit lengthier than we'd like. :)

There is a confession in this post, one that I would generally say I am not too proud of, but one that even though most parents would think its wrong....I love. At the age of 3 yrs old. Daniel is still put to bed. We don't put him in a bed and tell him its nap time or anything like that. We go and we lay down with him. We snuggle, and we pat his butt or back until he falls asleep. And yes. He. still. sleeps. in. our. bed.

When he started having seizures we freaked out, and he slept with us. so we could be there and no if anything happened....and well from then on....its just been the way it is.

Ok, I think that is two confessions, but oh well.

Anyways nothing has a better feeling than him inching his way over to you and curling up against you. It takes a lot of movement for him to get over to you and once he does, he just sucks it up. his face right up to your face. Once this happens though one must be careful. Daniel has this weird obsession with being nose to nose with you and if you should fall asleep, he'll lean his head back slightly and try to suckle on your cheekbone or better yet the tip of your nose. Don't ask why....we don't know. BUT, I can say I have woken up to this a few times and he starts laughing his butt off! Of course, I have also woken up to him starting to do it and he accidentally nips the end of the nose....that hurts (for future reference).

When he does this little trick of his it reminds me of a little kitten that has been taken away from its mother too soon and is just looking for anything to suck on. Its actually pretty funny. Weird but funny. Something we won't let him live down when he grows up!

Anyways, one of us always goes to lay down with him until he falls asleep and then we get back up. It is so very endearing when I have my arm over him patting his back, we are nose to nose, and he flops his arm over my shoulder and tries to pat my back. Or he just tries to pull me closer (perhaps with the hidden agenda of getting me close enough to nose suck!).

Lonnie often says to me, we should just put him in bed and let him fall asleep himself...yeah ok sure. We've created a monster I think. Lonnie also says....what are you gonna do when he's 12? and I just look at him and say, "I'll be patting him on the back and rockin' him to sleep if he wants me too."

Whose got who tied around their finger??

Outta sorts...

There are plenty of times when the alarm goes off in the morning and I just let out this big sigh, and know that I NEED to get out of bed.

Then there are days when the frickin' alarm goes off, and I let out the big sigh and just want to curl up and cry. Some days its so hard to pull myself out of bed let alone get up and do the balancing act that our days entail. Some times you just want to roll over and not get up. I get into these little funks more often than I would like to admit. The funks are tending to take a little bit longer each time to get out of.

Seems like everything always hits at one time. And mind you they don't have to be anything significant. It could just be that the schedule got out of wack because of a little added blurp. Just irritates me. I know in reality that its silly...

So to keep from complaining on here too much....just a few photos/videos and I'll be off.

This is a little video on Daniel's idea of fun. You don't hear much from him but I am sure from his facial expression you can tell he loves it. And its a great work out on the legs! (for the person in front not so much for Daniel - although it does stretch his legs some

This video was taken at augmentative therapy. It was the first time we've ever done this. Daniel read a book on the computer and then had to answer questions about the story at the end. I would like to say I would be pretty impressed even if it wasn't my child. At least we know that the ability to retain what he is hearing works.