A Look....

Today I called his name and he LOOKED at me, and waited for me to tell him to do something. Today, he was snorting like a pig--on purpose. Today, he went to daddy and said "goodnight" when I did not even tell him to do so. He was there. He told me he wanted applesauce-while he looked right at me.

Had another chiropractic appointment with Nick today. He is getting better. Said hi to the receptionist(with just verbal direction from me), said hi to Tutor on his own. Nick got a few more adjustments, in which he stayed completely still again following docs orders. In fact, Nick got onto the table on his very own. I asked the doctor what it is exactly he is doing. He told me he is removing/adjusting what Nick's body tells him to. Today he told me he removed some emotional thing that he said happened to Nick when he was three years old. He said he could even tell me the date if I wanted. I said No, but I was wondering what it was exactly. He said there is more to chiropractic care than just adjusting the spine. He is treating the entire central nervous system, and if need be, we can even go further in our treatments and start detoxing with the aide of his nutritionist on staff. He is pleased so far with the positive results he is getting. Maybe he is getting these from Nick during adjustments? I do know that we are seeing some results after his adjustments. Last Friday, his tutor graphed his Requesting at 80% during their session--the highest it has ever been. But, apparently school is still seeing the 'old' Nick-running off, slamming doors, etc. Which leads me to wonder-why the drastic difference in settings? Could it be that Nick knows the teachers are outnumbered and therefor he just goes for it?? Could it be that he suppresses his desires for such things while at home and lets loose at school?? Not exactly sure how to fix this problem. Maybe he is frustrated because he thinks they treat him like a baby?? How many years can one really stand going over the ABC's? When he was bored during therapy he would just stare out the window and his therapists were having trouble reaching him. We told them to challenge him with different things, and low and behold, they were shocked with what he knew! Maybe the same is now happening at school? Is he tired of the same old curriculum he has been getting since he was three?? One has to wonder.

Notes....

I was asked to keep track of any changes in Nick since we started with the chiropractor; so here goes.

The first visit went well. Nick really enjoyed it and seemed very at ease with everything-despite being a little anxious at first. After we got home, Nick was very verbal and laughing and playing outside. Mike asked me what I did to him to make him like that. I said 'Nothing'. Suddenly, Nick passed some gas and headed back to his room stating 'I need a diaper'.

Yesterday, while working with his tutor, Nick's verbal requests were at an all time high. 80%. He has never been that high since starting the program last summer. His tutor showed me the graphs they have been charting of all of his undesirable behaviors. They have dropped. This was also since starting the Risperdal. His slamming doors/hitting/banging have gone down considerably. I have not seem him bang his head in two weeks. Meltdowns have decreased, and the ones he does have he is easily consoled and can get a hold of himself much quicker. Last night in the bath, not only did he play in the tub-be he did not want to get out. He did not scream-but he kept going back every chance he got to get in the water. This is a rather new development-and a welcome one.

Today was his second visit. He said "hi" to the receptionist with some prompts, but left out the "SAY" as in "SAY hi". He simply said "hi". We practiced exchanging some social chit chat, and his responses were the same. He left out the "SAY" in all of them. For someone whose speech is largely echolalic, this is a step in the right direction. He smiled at the doctor, and did not distribute much anxiety this time around. He sat still when the doctor told him to, and even gave the man a high five. Tonight as I was reading him a book; he did hit me. Whether he meant to or not, I stopped and said "What do you say?" and he said "sorry". Usually he would repeat "What do you say?" or "say sorry". But not this time! He answered right away with the correct response!

Have we finally found the right combination?? Nick is getting his personality back. There is no way to describe how this feels. Like we are on top of the world right now.

No School Today.......

At least, not for Nick. They have a half day today which means that his schedule did a flip-flop. Literally. ON half days, someone had the bright idea to have the kindergartners flip their schedules around. For example: Nick is in the PM kindergarten class-which means his school starts at noon. On some half days he is actually off. However, on half days like today-he was supposed to be at school at 8am. Well, the school does not tell the transportation people this(Brillaint huh??) and it is confusing for all to say the least. Not to mention, it completely disrupts the whole morning routine we have established since the beginning of the school year. I swear, sometimes it seems the 'typical' people need to start using their brains.

Nick has another chiropractor appointment today though-so being out of school is actually convenient. We will find out what they saw on X-rays and develop a treatment plan. Not sure if they will do his first adjustment today or have us come back, but I am excited to be doing something. It might help, it might not. But we will try anyway. His appointment is at 4pm, and depending on what is going on tonight I might do another post to update what happened. I told Nick last night that there would be "no bus" today and that he would be going to the doctor. He started to get a little anxious and started whimpering. He then promptly told me "Goodnight Nick". :)

Update: Nick had his very first 'adjustment' today. Nothing big. Just more of a vibrating hammer type thing that was used on different parts of his head,neck,and spine. He seemed to really enjoy it. Nothing out of the normal as far as behavior wise so far. Although, I will be keeping track of his progress. We have another appointment on Friday, and the doc wants to see him at least twice a week. So, that will be another thing on top of everything else we are doing. I swear, will it never end? Of course I already know the answer to that question.

Why Such a Stigma??

As if this life with autism was not enough, it seems that there is a huge stigma (ok, not SEEMS, there is) added to moms that have to use medications. We are looked down upon, criticized for our decisions(did not go GFCF, did not try the right supplements, gave up too soon) even more harshly than others. Let me just get one thing straight. I never, ever, thought that 2 years ago my son would be on medication. We DID cut out diary, ate organic food, gave him Cod Liver Oil, DHEA supplements, vitamins, we tried clay baths to help him 'detox', and I am sure I am missing some other stuff we did. We even tried some supplements that were supposed to calm him and make him think clearer. What happened? He went psychotic. He was WORSE. He peeled off the baseboard in the bathroom, he tore through the drywall, peeled off the paint, and destroyed nearly every door in our old house from the constant banging. Despite all of the above mentioned treatments, he was still non-verbal autistic. The only supplement that offered reprieve was his melatonin-at least he could sleep through the night. However, as time wore on and he got older, his stimming got worse, and it seemed like we would have these manic episodes that would last days. I don't think anyone living in our house at the time of these episodes would doubted us. It was horrible. It was not a decision we took lightly-and I don't think ANY parent does. But, not all autism is 'recovered' through special diets or supplements, and we are doing what has worked best to date. That does not mean that we are now totally resigned to medications to help-we are not. We are still pursuing chiropractic care, and possibly some other forms of natural therapy. I am trying to go with what Nick really likes-and that is pressure. We are in the mindset of doing what works for my son. Why is there such a stigma with meds? If it works, then it works for that child. Moms should not begrudge other moms for doing what works for their kids. We already have enough to deal with, we should all be supporting one another in this journey-not tearing each other apart.

Ok, off my soapbox now. We had a great weekend (and this post was NOT directed at anyone-just general) and I think we even made some new friends! Nick spent all day outside today. Barefoot, and just immersed in doing whatever came to his little mind. He was happy, and we heard lots of his silly talk. I went to Barnes and Noble to order the new book by Susan Senator. She was nice enough to include some stories from families, and we just happened to be one of them. The book is called "The Autism Mom's Survival Guide". Once I get it, I will post some more about it. I loved her first book "Making Peace with Autism". That was the first book where I could relate. Up til then, the kids I had read about all appeared to be higher functioning, or offered hope of miracle like 'cures' through special diets and such. This book was REAL. She was telling it how it really is, and how she finally came to accept autism. I often wonder why these talk shows cannot have someone like her on them? I am sick of certain celebrities being looked upon as autism experts. I would love to see someone like Dr. Temple Grandin, or Susan Senator, or Donna Williams, or Dr. Simon-Barron-Cohen....just ONCE! Try giving those people some quality air time...not those celebrities who shall remain nameless.

Wow, this turned into some sort of a vent! I am watching my darling 6yr old propel himself around the dining room table by sitting in his little Tonka Dumptruck. He is flapping his ears and holding a Spiderman sticker, and jibbering to himself. He is happy, and so are we. Isn't that what it is all about?

Breathing Again.......

I think it is safe to say that for the better part of the last 9 months or so, we have been under some sort of siege with Nick's moods. Outbursts were becoming ever more frequent and aggressive. He could go from happy-to pissed off in the blink of an eye. There were many days when this happened every hour, every 30 minutes, all day long. Sometimes we knew what set him off, sometimes we didn't-and would wander around asking him "what happened?" only to be slapped, or have something hurled in our direction. I was always afraid it would strike while driving and he would launch his sippy cup. That was my fear always when he had a drink in the car. Or even a toy. Or sometimes even Nick himself. He would be in his room, curled up on the floor of his closet screaming. He would be completely unable to function, and this could go on for hours. Days like this his therapy would consist of just trying to snap him out of it. His therapists were mainly just trying to control the damage. He banged his head, hit himself, bit himself, hit his therapists, pinched them, screamed, shouted, slammed doors, overturned chairs, you name it. To see him like this was heartbreaking. Then, after a few days, he would be completely the opposite. Saying words, eye-contact, joint attention, laughs, smiles, everything. Then, suddenly a few days later we were back to hell.

I came to the conclusion that we needed more help. I wanted Nick to be comfortable in his own skin. I wanted it to just stop. I contacted his doctor. He had not seen Nick in more than a year, and I explained to him all that was happening. He gave us a prescription for Risperdal. A very low dose (.05mg), just to take his 'edge' off. We saw results immediately.

-instead of stimming all through dinner; Nick was able to sit at the table and just eat like the rest of us.
-his toe-walking and stiffening have decreased dramatically; my baby is no longer stuck in a stimming cycle. He still stims, but he is relaxed.
-little things like me driving him to school used to cause him so much anxiety that neither of us enjoyed it. Yesterday, he only whimpered twice.
-he talks more.
-he is happy, and he is comfortable.
-Our stress has decreased dramatically as well. We can breathe again. My shoulders and neck no longer hurt.
-We are enjoying our son.
-Significantly less yelling and tension in the household.
That is worth it. To have a Happy Home. A peaceful home.

Mommy's Exhausted...

7:30 a.m.: Woke up. Funny really as I don't even remember falling asleep. My mind is already racing with all the stuff that needs to be done just to get us out the door this morning for soccer. First thing I think: The laundry is still in the washer. Second thing: Must shower. Showering is good. Very good.

8a.m.: The process starts. Move laundry out of washer into the dryer. (in order to accomplish this, I must first empty the dryer...have I mentioned my disdain for laundry??) Search through dirty clothes for Michael's soccer uniform. Realize that he did not put it in the dirty clothes from last time. Oh well. At least he'll have clean underwear on right?? At least, I think.

8:30-9a.m.: Get dishes done and start preparing breakfast. Michael wants mini cinnamon buns, while Nick gets his usual of two waffles. The dog of course goes in and out at least 15 times during breakfast alone. He is old and probably forgets that he just went out, among other things.

10a.m.: Breakfast is done and I am cleaning up our morning dishes. Let the boys do whatever for a bit while I watch a little TV.

10:30a.m.: Start the process of getting Nick ready to go. Change his diaper, get his clean clothes, and brush his teeth. At six years old he still requires most of this to be done for him, although he is getting a little better at helping at least. Michael starts to slowly get his soccer uniform on. This takes a while because he is watching TV while he does it. Somedays Nick even doing stuff on his own is faster than Michael.

11a.m.: Boys and me are ready, all that remains is waking up hubby and well, he can dress himself.

By 11:15 we are out the door and headed to the soccer field. The game starts at noon, but coach wants them to be there by 11:30 to warm up.

1pm: Game is over. We are all pretty hungry by this point and stop off to get some Burger King for lunch. By 2pm Michael had to be at the Youth Center for the end of season party. So, in less than an hour the kid had a Jr whopper meal, and pizza. You'd think we never feed this child with the voracity in which he devoured the pizza. One of his coaches asks if we will be at the Easter Egg hunt the next day. I say "probably not, because our youngest does not enjoy stuff like that". She walks away clearly puzzled and most likely thinking "What little kid does not enjoy easter egg hunts?" Ummm, this kid. He would enjoy being outside, but he would not grasp the concept of hunting for brightly colored eggs. On a small scale (like our backyard), sure. Not with a gaggle of other children and their parents. Can you say "Overstimulated"? The child met his social outing quota by being schlepped to see "Reptile Man" at Michael's school earlier this week. By the end of the program, I had managed to get Nick to the front door of the cafeteria-that was it. Fortunately, as it turns out, being on the outside of a room full of snakes is socially acceptable. We were not the only ones watching from a distance. Michael however, was right in there enjoying every moment. He's used to Mommy having to stand on the outside sometimes.

3pm: We finish with the Youth Center. (I did not take Nick to this-it was just myself and Michael). I actually got to talk with some of the other parents-what a concept! Afterwards, we head to Barnes and Noble to pick up the latest book in the "Diary of a Wimpy Kid" series. Michael has begged for it now going on about two weeks. I caved in finally.

By 5pm we have made it home again, picked up Nick, dropped off Michael, and head to the grocery store. 6pm we are on our way back home to unload the groceries, and start something for dinner.

7pm Lasagna is cooking, and I am making Ravioli for Nick. 7:30-bath time for Nick, and by 8pm he is taking his medicine to go to bed.

By 8pm I don't know who is more tired-me, or Nick. That was my day in a nutshell. I am tired just typing it!

Screaming, Biting, Banging....Had them all this week.

Another week is coming to an end, and I must say, I am glad it is over. Not that things have been that bad, just...challenging.

Last weekend I had weekend duty at work. So, I was put on night shift for two days. Which of course, messed everyone in my house up. Not sure about your house, but in mine, if mom is not awake during normal times-then everything seems to go south very quickly. Daddy tries to handle things, and for the most part he does a good job so I guess I should not complain. But, there are just things that mommies are better at doing. And the little boys of mine know that. For simply fun, you go get daddy. For everything else, mommy is where it's at. Needless to say, Nick was discombobulated-but held it together rather well. Sunday night however, we saw some disturbing behavior. I put Nick to bed with his normal dose of melatonin, and kissed him goodnight. About an hour later I am sitting at my computer in the dining room and I hear Nick just start screaming. Unusual. Especially with melatonin. I go in there to find Nick biting himself. He sits up and proceeds to bang his head on the wall. I try to comfort him, but it is no use. He simply lashes out and slaps me. He then bangs his head again. Words can not describe how helpless you feel when your child is locked in his own mind and cannot tell you what is wrong. After more than an hour of intermittent screaming,biting,and banging (the three ING's at our house), our only conclusion was that he might have a headache. I scour the hall closet for some Tylenol-we are fresh out. Damn! By this time it is around 10pm, but I don't care. I leave Nick bundled up on the couch with daddy holding his hand and go out for the Tylenol. First store closest to our house does not have any. Damn, Damn! I then head toward a gas station a little further away, and finally see the best thing in the world to me at that time...TWO whole bottles of Children's Tylenol. I snatch one up and head home. By the time all I said and done, it is midnight before sunshine gets to bed. I was hoping it was just a fluke episode-but it has happened a few times since then. Don't know what is going on; but I am going to ask his doctor next week when we go.

Speaking of that, I actually cannot wait until Thursday. Nick's language seems to be at a boost right now, and he is doing well in his therapies. When he is able to concentrate. And is not stimming at lightning speeds. He needs some more help. The mini tramp is good for re-directing his energy-but only goes so far. He cannot relax. When he is; he simply does amazing. I have also asked his doc for a referral to a chiropractor. One of his tutors mentioned Nick to him and now the guy wants to see how he could help Nick. He is not charging us anything out of pocket-just what insurance covers. So far, he has only treated NT adults, but is interested to see if he could maybe start branching out into treating kids on the spectrum. So, Nick will be his first ASD patient. Maybe it will help Nick be more comfortable in his own skin. All I want is for my baby to be his absolute best. Like I said, Happy Nick we can deal with. I am not looking to 'cure' him, or drug him for my pleasure. We have not come to this decision lightly. This has been cropping up from the back of my mind for a year or so. Diets & Supplements just did not yield enough results.

Don't be fooled by this happy demeanor....

That is what I am having to tell myself today. Nick has been in a happy mood all day long. The weather was nice out, so hubby let him wander around in our fenced in backyard. Nick was happy as a clam. All of this talking and smiling is what has lulled us into that false sense of "all is well" in the past. This is the Nicholas I want him to be..this is the Nicholas HE wants to be. Happy, playful, talkative(even if he was repeating "Nick don't get the vacuum!" over and over :) ) asking to be tickled, coming up to us for fist pumps(which is uber cute by the way!), playing with his toys instead of thrashing about the house destroying our doors. In an instant yesterday all that was gone. Replaced with screaming, throwing toys, hitting me, and just all out losing control. I spent 30 min just sitting with him on the couch. Nick was curled up in a ball in my arms and we just sat there. I was happy that he was being cuddly, but I could have done without the screaming and throwing.

Happy days such as this tend to make me forget about the bad days. They make me think "Oh I can handle this", "It's not that bad". Then WHAMMO! We get hit with several really bad days in a row where nothing is going right. My parents did tell me that they would possibly help to buy him a squeeze machine; since he really seems to like pressure.

I took my parents to the airport yesterday morning. Had to get up at 3am in order to get to the airport by 5am. I came back home, put some mini-cinnamon buns in the oven for Michael, got him up and ready for school, then I passed out on the couch until around 11am. Not much housework got done yesterday I tell ya.

He Does What he Can

I have not posted so much lately due to us having family visiting. It has been wonderful having an extra set of hands around here to help with things around the house, as well as the kids. I now know that I could get really used to having someone like a nanny to help with things like calming Nick down from a meltdown, or tending to dinner while I get some time to do some small cleaning. Having someone who will clean up the dirty dishes after dinner while I get the kids a bath has been divine. Of course my mother did not have to do this-I did not make her; but she did it anyway just to help. We of course had plenty of time doing other things too. Taking Michael out for an afternoon; just him. He got some Legos, some new rollerblades, and we went to see the movie "Tooth Fairy". Nick also got his very own day in which he was allowed to pick out any toy he wanted. There was no apparent limit, and the kid could not have been happier. He was all smiles on his day and he KNEW it was his day. He said first thing in the morning-HAPPY.

We have one more day with them before they head back to Florida. They have been a huge support system for us regarding Nicholas. "He just does what he can" my mom says. My mom has been very supportive in getting more help for Nick. More help as in possible medication. I have been toying with this idea for a few months now. Only because I cannot find any correlation/cause for some of Nick's severe stimming/anxiety attacks. He gets very tense and just seems to go completely wild. He will be like this for a couple days, then he will be completely the opposite. When he is not this way he is doing remarkable things. Like looking at us when we call his name, following two step directions, speaking to us, requesting things from us, and just all around able to focus. When he is not like this, he is stimming so severely that it is impossible to get anything out of him. There is also a huge gap between what he does at school, and what he does at home. There is just too much difference between his "good days/bad days". I had hoped it would not resort to this; but if it will help him then it is worth looking in to. I was just hoping he would not be that severe to need medication-but I cannot deny it any longer. The calm and relaxed Nicholas is more lucid. He is happy-and he knows it. He is able to communicate better and enjoy himself. The stimmy/anxious/tense Nick does not enjoy anything. He is not "there", and is not happy. I just want something to help take his edginess off. I have been e-mailing his doctor, and we have an appointment set for 1 April.

Wish us Luck....

We are FUNKdified....

Ugh, Nick is in one of his funks. Don't know how else to describe it really. It has been going on all week. It is one of those "I am so rambunctious and in need of stimulation that I cannot sit still". No, not even for a second. He is all over the place physically as well as emotionally. One minute he is fine, the next we are on the verge of total implosion. Not even therapy was a repreive-as he pretty much could not pay attention to any of it this week. Wednesday the slightest thing would totally set him off and we were simply trying to make it to bedtime. One of those weeks where I am just trying to hold it together hour by hour. And tomorrow I got to take Funkboy to the airport to pick up family. Not enough Tylenol in the world for me right now. I have to mentally prepare myself for the stress that he will undoubtedly cause. I am taking him in his stroller-because I simply cannot handle him right now any other way than confined. Yes, it may look strange to have a six year old in a stroller-but I don't give a shit really.

I Give Up...

On the whole door thing. I know I will never understand it, can barely prevent it from happening, and it is not seeming to be going away anytime soon. Our house is locked up like Alcatraz already, and we are in need of more locks. I was attempting to get in a quick nap on Sunday-and had things all locked up. Informed hubby of my whereabouts, and everything was set. I HAVE to lock our bedroom door if I want any kind of respite. Otherwise Nick will come flying in, and start with the closet doors. As soon as I get him away from those and back in bed, he starts with the bedroom door. It becomes a vicious cycle. Closet doors, bedroom door. Closet doors, bedroom door. Lather. Rinse. Repeat. This time, I had managed to get in a few precious moments of bliss, when suddenly I heard a dreaded "WHAM!" It came again "WHAM!" Since nobody else seemed to hear this slamming noise (still don't understand that one??) I investigated. (rather loudly I might add). Nick had moved on to the garage door. This door is not exactly light. However, Nick has taken this door thing to a whole new realm recently.

.....Gas tanks have doors on them dont'cha know. See where this is going?? At first it was our gas tank. Not too bad-let him do it a couple times then "all done". Now however, little mister can spot those little gems in a nanosecond. Yesterday he ran right across the street to the minivan parked on the curb. He has also found the gas tank on his school bus. Parking lots have become a nightmare. If you are not paying attention and holding him with only half your strength, he will weezel out and run like lightening to the nearest gas tank. If you have never seen how fast lightening can run, just stop by sometime. Today it happened to be a silver compact car with its' occupants still inside it. I am sure they were wondering what that little boy was doing careening towards their car, and his frazzled mom trying in vain to regain control.
....Nana and Grandpa are going to get a workout.

Dentist

This week was a busy week. But then again, every week is busy around here it seems. Nick had his very first dental visit on Tuesday. This was a two-person effort-hubby would not get to stay home for this one. Nick was understandably anxious as we entered the building. He had to go in an elevator-something that he is leery of, but he did spectacular. Once we got to the waiting room, it was filled with other kids and Nick was already on edge. He was running everywhere. Hubby did not even get a chance to sit down. He was on full-blown Nick patrol while I filled out all the paperwork. Even so, Nick managed to get behind the counter and start slamming cabinets. The forms started with the usual; birthdate, sex, etc. But then I got to the middle portion that said something like "circle all that apply"...hmmm, Speech Delay..yes, Developmental Delay...yes, neurologic something...yes. Then I see different conditions listed on the bottom portion. Bingo. Autism was one of them. I also listed some of his sensory issues, as this office would pretty much push him into sensory hell. Then it asked something along the lines of what requests I have for my child. I found myself writing "treat him like a normal child, talk to him like any other kid and explain everything you are doing". He is autistic, but he is NOT stupid. We do not treat him like that at home, and I will be damned if anyone else treats him as such. Anyway, the time comes for us to go back into another office to discuss what brought us here in the first place. The assistant is very nice and laments on Nick's long eyelashes and big blue eyes. She is very patient and explains we will just do as much as he lets us do. If we get to a cleaning, we get to it. We will just do what we can. I already like this place.

We take Nick back to an exam room, and get him situated in the chair. He is bestowed with a small magna doodle, and a pink toothbrush that a nurse accidentally gave him. She went to try and exchange it for a blue one, but hubby told her there was no need, as Nick likes pink. Nick does not see gender specific colors, all he sees is that pink is a nice color and he likes it. Even his therapists have noticed that he just seems to like pink. The Dr comes in and takes notice of his adult tooth growing behind his baby tooth and that his mouth is very small. She says what we had been thinking all along "hmmm, that tooth will have to come out, as well as the one beside it to make more room. Otherwise, his teeth will be all bunched up. See? There's not room in here for it to grow in the right spot. He will probably need braces later on, but we will do what we can right now." Nick is squirming and crying just a bit, no where near the scale as he got his vaccines though-this is going rather well. We actually managed to get through a cleaning. Success! Hubby came out going "wow, that was alot of crying." I looked at him like he was nuts. "That??!" "Oh no, that was nothing. You should have seen him when they gave him ONE shot. Really, that was just a little whining."

We schedule his tooth extraction for a few days later. Yesterday. Yesterday Nick walked into the office like a pro. He pushed the button for the elevator, and waltzed in like saying "I got this." In the waiting room, Nick was stimmy-but happy. He jumped and flapped while looking at all the toys. One little boy was asking questions about him. Things like "why is he doing that? why does he like that?" His mom explained that he was autistic and did things differently. Hubby piped in "yes, but he knew his ABC's and could count to 30 when he was two!"
"Wow, really?" the boy said. His mom even chimed in "Yes, he is very smart isn't he?"
I did not mind that the little boy was asking questions-it is better than simply staring. And we got the opportunity to give them a little education. Mike presented them with a little card that explains autism, and told me "I carry those around everywhere; so when people stare I give them one." This is from a guy who would not even say the word AUTISM a few years ago. Now, he tells anyone who will listen.
We went back to the exam room, and this time Nick climbed into the chair by himself, and requested that the light be turned on. We gave him the sunglasses to protect his eyes, he had some tape to feel on his hands, and a magna doodle. He was ready. He barely flinched as they gave him some numbing stuff for his mouth, and a few minutes later it was time to pull. The first tooth came out in no time, as the roots had already been degraded by the adult tooth behind it. The second tooth took a little more time, a little more crying(actually, hardly crying-more like whining)and a few more minutes later it too was out. We were done. Nick walked out like nothing had happened. The funny part came on the ride home. Nick was blowing raspberries and sticking his tongue out due to the anaesthetic. The dentist was wonderful, and I would recommend them to anyone. All in all, it proved to be not such a big hassle after all.

Silence is Golden.....

It is quarter to ten pm and the house is silent. Between all of Nick's therapists, the dog, plus the boys themselves-this house is one busy place 90% of the time. Tonight was therapy and then right to soccer practice. Once practice was over, we piled in the Jeep and grabbed some B.K. for dinner. Headed to the store to buy some more baby wipes, drinks,etc. and then came home around 8pm. Everyone ate, some got baths, and story time (Nick is really big on requesting "wanna read a book"-so I cave like always). A little dose of melatonin and Nick is in dreamland inside of 30 min. Unlike 3-4 hours without.

Michael too is asleep. Tuckered right out after all that running. Oh how I love soccer season for that very reason. Even the dog is passed out. YAY Me!

Much Ado About Nicholas....

This weekend was all about Nick. 6 years ago on Feb 12, a beautiful baby boy was born. Around this date 4 years ago, that same beautiful boy was diagnosed with autism. It has been a roller-coaster ride ever since. We have had lots of "on the job" training-as no one can prepare you for life with autism. We have learned a lot of things on the fly. We have come a long way as individuals, as well as a family. Nick turned six on Friday. Saturday I took Nick to Toys R Us for a day of spoiling. I originally was not going to take him simply because I wanted everything to be a surprise. Mike insisted that Nick go along.
"Let him pick out what HE likes, not what YOU think he would like." I was kind of miffed at this, as I like to think that I KNOW what Nick likes, but I listened and took Nick along.

I was pleasantly surprised at what Nick gravitated to. He did in fact like everything. Baby toys caught his attention, but I kept moving along hoping to find something that was more age appropriate. A part of Nick still likes the baby toys, and I get torn between what to buy. He is getting older, and I want toys that reflect that. It seems only respectful to him that his surroundings reflect more a kid of his age. He also seems to LIKE it. This year he picked out a cool looking dinosaur that roared and walked when you pushed a button. The age range was from 3-8yrs. We also found a mini-trampoline, and a 3D picture projector. I figured if he thinks in pictures, then by G*d he is going to have the best ones we can get. I bought all the slides that come for that projector. Soon he will be informing us about life on the African Prairie.
We then went to Safeway to pick up a birthday cake. This is where autism can strike out of the blue. We walked up to the entrance, and Nick starts to pull back. He is resistant to going in. I tell him it is ok, and we are going to get his cake. He complies, trusting what I say. But he quickly gets overloaded and a meltdown is ensuing. We have learned throughout the years to become good at detecting what his triggers are. I quickly realize what is setting him off. There are thousands of helium filled balloons all with bright colors,and a whole forest of colored flowers filling the air with their scents. All of this at once is bombarding Nick's senses and he quickly covers his eyes and starts screaming. I wheel him through in record speed and am able to avoid a full-blown meltdown. But that was still not before we drew a few stares from clueless shoppers. I pay no attention to them, as they do not have any comprehension of just how close we had come to a scene much worse-and they would be amazed at this mommas quick response. We buy the cake and here I am having to wheel Nick through this sensory hell again in order to get to the car. This time however, I am prepared. I prep him by saying "Ok Nick, we have to go this way to get to the car. It will just be a minute, and we go to the car. It will be alright." As I say this, he is already covering his eyes again, but I just keep chanting "It's ok..almost done." Then as we exit I announce "See, we are all done now. We go to the car." Nick takes his hands away from his eyes, and all is well. Smiley boy is back again.
Nick also got several garden pinwheels from our former neighbor. She remembered he liked those and had no qualms about spoiling him with tons of them. We also bought a German language CD program. Maybe he can learn his dad's first language-since he seems to have the ability to pick up and repeat multiple languages. It also pairs things with pictures. We celebrated his birthday last night with a simple family party. We all sang "happy birthday" and Nick smiled that darling little smile of his as if to say "I feel so loved right now".

As Temple Grandin would say "Different, Not Less."

Weekend plans....

This is our first weekend for soccer. Michael has a game tomorrow at noon. After that I am thinking of either hitting the gym or going for a run-depending on the weather. Sunday we might have a little party for Nick-his parties are never very big affairs as he does not enjoy a whole bunch of people. A simple cake and some gifts will do just fine with him. Other than that, not much going on at all. Just the normal weekend chores of grocery shopping and housecleaning. We are also watching the Olympics. Funny to think such a big event is going on only 4 hours north of us. Hope everyone has a great weekend!

Just a few questions to ask some of these companies....

1) Can you please make a 'noiseless' microwave? We would actually love to use ours with no screaming from the boy.

2) Can you make potty seats big enough for a nearly 6yr old who has a very skinny butt? One that won't smoosh his manhood?

3) And while we are at it; can you also make a noiseless dishwasher? Not even the so called "quiet" ones are truly quiet. We should know. Our kid has supersonic hearing.

4) Whatever happened to the "Gerber Little Flakes" cereal?? That was the only effing cereal the boy would eat. With no screaming. Now we have been forced into the unknown and I am not sure I can mentally handle that right now.

5) Could we also get some pediasure that won't give him diarrhea?? When you have one of 'those' weeks (and all you ASD moms know 'those' weeks) it is a real toss-up between nutrition and stools. Stools has won everytime-because no one in our house wants to change a weeks worth of loose, runny, crapola.

6) Can you please make items that are GF/CF/SF a little more affordable????? I mean, without all that extra crap in there-why is it so expensive?? My brain says it should be cheaper...but that's just me. Isn't rice more abundant than say..cows?

7) And why the eff do public toilets have to flush so damm LOUD?? Hard to potty train the kid when the simple act of flushing the darn thing sends him out of his mind. All thanks to that super-duper hearing of his.

I would also like to thank the following companies for their brilliant products:
Safety First: Lovely light switch cover. No more masking tape.
First Years: The BEST damm baby gates EVER. They might just be indestructable. But you have to get the ones that bolt into the wall. Nothing else worked. Saved us from a nervous breakdown due to constant cabinet slamming.
Step2: Best toy kitchen. I have seen this at many an ASD house. Something about those darned cabinets!

Ramblings.....

I am sitting here watching Nick ever so slowly eat his dinner. Chicken, mac & cheese, and green beans. We have been here for almost an hour, and we are just finishing the chicken. We still have macaroni and beans to get through. No worries though. Tonight he can take his time. We had a relatively early dinner, so he should be fine as soon as he swallows the liquified chicken he has had in his mouth now for 20 minutes. A good trick we have learned: Giving him some applesauce seems to speed this process up a bit. As you can imagine, brushing his teeth when he is in one of these hoarding phases is simply a nightmare. Filled with lots of crying, and lots of liquified food spilling out of his mouth. I don't know why he does this. Most of the time we can figure out why he likes to do things, which leads to us understanding him better. This phase we just don't get. It comes and goes, and we never know when or how long it will last. We simply get through it. I hate, hate, hate it. I hate not being able to figure out WHY he is doing it. It gets so frustrating for both of us. Yesterday Mike told me Nick started breakfast at 8:30am, he finished at 10am.

Adding to the mayhem is our now disabled dog. He went outside last night just fine, came back limping, and has been limping all day. He is very old, so I am thinking it could be arthritis. He is able to bear some weight on his leg, but not much. He is actually doing better tonight than he was earlier today-but still hopping along slowly.

As if school, therapy, work, and dog were not enough; we have now added soccer to our schedule. Practices are Tuesdays and Thursdays 6pm-7:30pm. Right in the middle of Nick's therapy sessions. Mike and I will have to take turns going to practice with Michael. Life is all about finding a balance. We still struggle with balancing the needs of both boys. Nick needs so much more time & energy that most days we are mentally drained, and Michael just seems to blend in with it all. Soccer is HIS time in the parental spotlight.

IEP meeting..

We had Nick's IEP meeting last Friday. It went rather well, but what shocked me was the fact they said that he had no functional language. HUH?? They clearly saw the look of confusion on my face, and I told them "Umm, yes he does. He asks for things all the time at home." And even lately he has begun making his own choices. When I ask "Do you want milk or juice?" instead of just repeating "milk or juice?", he will think about it for a while and then say "Milk." or "Juice." So to tell me he has no functional language was quite the shock. This is a child who came to me the other day and told me to fix a car that he wanted to play with. He even brought me the car! Today he put his bowl on the counter and said he wanted fish crackers. The thing is, he may do all this at home-but in school it might be a different story. They jotted down all the notes I was providing them, and were astonished by what he does do at home. I told A (his BCBA) this and she had equal confusion. She made a note to go and visit his class and observe how he is in school, and maybe give the teachers some pointers.

Today we met with A to discuss re-vamping Nick's home program. He was breezing through so many programs in the fall, but has now seemed to hit a wall. Things are hit-or-miss with him. One day he will get it 100%, the next day it will be 10%. We are looking for more things to really motivate him. They are also going to start incorporating some of the Early Start Denver model into his programs. It is a less structured form of ABA and more natural. (from what I have been told) It goes through all the developmental phases of early childhood. Little things like following points, and being more "socially" tuned in. We hope to see a lot of progress in 2010. The best thing is right now he has already come so far! He is really starting to blossom. In HIS time.

First week in the new house..

We have completed our first week in the new 'crib', and it is starting to feel a little homey. The first few days last week we were going back and forth between the houses which left us no time to really set up the new house. We had to clean the old house to meet base requirements(that is a huge chore unto itself). I had to work, and we had a couple of days that we were quite "overbooked". Wednesday we hired a cleaning crew to finish up what we had started. All they really had to do was wash the walls, clean the floors and baseboards, and just straighten things up a bit. They did a wonderful job and ended up finishing everything 30 minutes prior to our final inspection on Friday. Which was supposed to be at 9am. Inspectors did not show up until 10am, and I had Nick's IEP meeting at 11am. UGH. Why is my life like this?? So overscheduled. We ended up passing our inspection; and making it to our appointment. Why is my child so into doors???!!! This is not just something that happens at home now, it happens everywhere. Everywhere we go has a door. A door that must be slammed open and closed at every possible opportunity. It is quite exhausting taking this child of mine out sometimes. Yesterday's Dollar Store trip was not quite tranquil. Nick thought it was fun to knock things off the shelves and watch them fall to the floor. Then he thought my reaction was uber funny. We quickly headed out of there to Target where I could put him in a basket and not have it look so funny. (Afterall, he is a gangly/tall nearly 6yr old-whose feet nearly drag on the floor in the front seat of a cart)He now rides in the back-all sprawled out and making lots of happy stimmy noises. People look regardless, so at least they can look at a happy stimmy child rather than a rambunctious child and one stressed out mommy. Right??

Anyway, I got my pictures up on the walls last night with lots of help from happy stimmy boy. He was jumpy, flappy, and had fun lining up the frames in the hallway. As I hung one, he would slide the rest on the floor to make room for the new one he took out of the box. Did I mention he was happy-stimmy child?? There was lots of jumping, screeching, and overall giddiness. It made a boring job rather fun actually. Where does he come up with this stuff??!! Never known anyone to be soooooo happy about hanging pictures. We had a couple of good laughs.

Today, we are off to Target again. I found a few inspirational quotes to put on the walls thatI like. We have a big empty wall right when you come into the house that can use something like that. I can use a little uplifting myself every now and then.

New House!!

We are finally getting all moved in to our new abode. Oddly enough, for someone who is not supposed to like change, Nick loved this house from the get go! He has his own room with all of his own stuff in it, and we have had ZERO problems with transitioning him. The only time he screamed: when we had to go back to the old house to get more of our stuff and to clean it. He hated seeing things in such disarray and made him uncomfortable. Sunday we were able to get respite care for him while we went to the old house to clean up. That way he was able to stay *home*. Both the boys LOVED riding in the U-Haul truck with daddy-that never seems to get old. To Nick, that was almost as good as riding the school bus!!LOL! He is such a little boy :)

Michael has his own "boy cave" with his video games, and he has even joined the 20th century with a tv in his room. We made it ten years with no tv in the kids' room, but he is getting older now and it is a step up. Can't treat him like his little bro. Little brother is never far away though-yesterday when Nick needed some comfort, he went to his big bro's room and laid on the floor listening to Michael and his TV. I think they both like having their own places to go to get away from it all. It seems to be working well so far.

We are still getting everything situated. Once we do I will post pictures. Just wanted to get on here and let everyone know that we are still here and doing fine :)

We Are Moving......

Into our new house tomorrow. We are picking up the U-Haul truck around 2:30, and we get the keys to our new house shortly after! I am so excited! There is a nice big playground RIGHT outside our back fence, which will be lovely for the boys in the summer. It has a garage!!! Yes, I am excited about a friggin' garage. We have only had carports. Not so lovely for storing things. We will also have a pantry-no more using up cabinet space for food items, and I think the most thing I am excited about....NO MORE BASEBOARD HEATERS!!! For all of my family who has never heard of these, since they live in WARM Florida, they suck. Just so you know. You can't put anything within 6 inches of these awful things, because, well, it is a fire hazard. Try designing a room around that shit. Michael had a blanket from his bed fall onto the heater in his room and it made a godawful smell that permeated the room for days. It didn't burn the blanket as it was not too hot, but warmed it enough to produce some "aromatherapy". Long live central heating!!!!

The boys are excited about moving. Nick has taken to placing certain fave items by the door as if to say "Don't forget this!" He knows something new is going on with all these boxes packed up, and the fact that his matress is now on the floor. He likes to explore new places, as long as he has a place to go for comfort if he needs it. Don't we all like our own "comfy" places?

We won't have internet/tv/phone until Tuesday. So, it might be a quiet weekend actually. Maybe we will break out some board games from our camper? Have a good weekend everyone!!

Something on my Mind...

There was a post on a bulletin board not too long ago. Click HERE to read the article. The story is two mothers were shopping in a local store. One of them had a baby, the other one had an older child. The mother with the baby goes and starts telling her baby "say Hi to the girl". The other mother, tells this mother "Don't let my child get near the baby". But, it was too late. The older child had hit the baby. Before this happened, the mom had said that her daughter has issues and not to let her near the baby. The baby was not seriously hurt, and cried for a few seconds and then was fine. As a parent who has a special needs child, I have been in these awkward situations. Having to apologize for my autistic son when he hit them. It has not happened a lot, but it has happened. Nick has no idea that what he is doing is wrong-he just knows that he is upset. Therefor, trying to tell him what he did was wrong is not going to compute right away. It takes time and lots of repetition. We also try to avoid these outbursts, but honestly, sometimes they just happen and you can't do anything about it. Such is life with having a disabled child. Now, I also have a typical child. And yes, if someone came up and hit him I would be mad. But, some of the responses to that post were just downright horrible. Suggesting that we put our children in "higher" care if we cannot control them, that they are a danger to the general public, and that we should leave them at home. Some question our parenting skills and say things like our children are one step away from being a felon or worse. These are mothers saying this. This is the kind of thing we have to deal with everytime we take Nick out. I can feel people staring at us. Wondering what is wrong with that little boy in the basket as he grunts and bangs constantly on its sides. They stare, and probably talk about him as they are in their cars going home. Sometimes it doesn't bug me. Sometimes it does. Yesterday, it bugged me. Then on the way home, my mind wandered to think of Fran Peek.

Fran's son, Kim Peek, was the inspiration for the movie "Rainman". Kim did not have Autism. Instead, he had Agenesis of the Corpus Collosum-with other impairments. He memorized every book he ever read, new every zip code in the US, among many other amazing feats. Doctors told his parents to put him in a home and forget about him. Kim never went to an institution. Instead, his parents loved him and raised him at home. After his mother passed away, his father, Fran, tended to his every need...every day. Since "Rainman" Kim has had many speaking engagements-accompanied by his father. He continued to learn social cues, and was even developing a sense of humor. Kim Peek died over the holidays. He did not die from his mental condition, he died from a heart attack. His father outlived him. Of course, this is every parents nightmare. But think just for one minute. Kim never had to be institutionalized. Fran never had to worry about who would care for his son when he passed. Never had to worry about the care he would recieve, or that other care givers would simply exploit Kim. Kim lived at home his entire life, and got to travel to world renowned places sharing with the public his amazing abilities. People like that give me the strength I need to make it through another day. The world has lost a great mind, and a great person. We can sure use more Fran and Kim Peeks in our world.

The Power of "NO"...

Last week we noticed that Nick was shaking his head from side to side while sitting at the dinner table. I had put some food in front of him and he began shaking his head. We just thought "Isn't that nice, another sensory stim, ok Nick let's move on now" We thought that, well, because a lot of what Nick does is purely sensory related. From smacking things, to rubbing his head on the carpet, to grinding his teeth. All of these have been phased in and out of our lives at different times. We don't really give it a second thought anymore. I am realizing though that maybe we should. Case in point, the head shaking. The other day, Diane and I had a chance to talk in the hallway while Nick was on a few minute break. She brought up something quite extraordinary. She got the impression that Nick was shaking his head "NO". She would ask him to do a certain task-and he would shake his head. He had done this several times throughout their session, all of them towards being asked to do something. In the few days prior to her and I speaking, we were starting to realize that Nick might just in fact be doing this. For those who have a disabled child, we often buzz around caring for them just as we had when they were an infant. Most of the time we don't even realize we are doing it. Time seems to stand still in that respect. They eat, drink, wear, etc. whatever it is we put in front of them (or feed them by hand) often with little to no protest. NO is a powerful thing. It let's someone know that YOU do not WANT what they are giving you. It let's them know that YOU indeed have a voice and opinion about things being done. It let's them know that YOU are a thinking, feeling, living person. For nearly 6 years Nick has not been able to say No. He has had to be happy with what was given to him. Nick, mommy and daddy are slowly getting a "clue". You are nearly six, and deserve to be treated as such. I am afraid you are discovering girls...in your own way, but also like so many other little boys. Yesterday you learned about Mickey Mouse. You are getting tired of Goldfish crackers for snack, you now like Mandarin Oranges. You love 80's music-and even sing a few songs. Instead of ripping my magazine to shreds, you carried it around for days looking at all the pictures. All four of us are learning on this journey my dear boy, and we are all better people because of you. Don't hold it against us Nick, we can't help being "neuro-typical".

Happy New Year!!

Another year has gone by, and actually I am happy that it is done. I spent a lot of 2009 away from my boys and I hope that 2010 will leave me home more. We move into our new house in just a couple of weeks! Not anxious to have to pack up all our stuff and try to move with two kiddos, but at least this time we won't have to deal with feeding a newborn every 3 hours. When we moved into this house Nick was just a wee baby. With every new year it brings new promise. New skills gained for our Nick and new hope for what he can achieve in the next 12 months. He has gone from eating microwaveable meals consisting of lasagna and ravioli--to eating steak, pork chops, veggies, mashed potatoes, eggs, bacon, and anything else put in front of him. We have even managed some gummi candy, and a chocolate chip cookie. He follows directions, is counting up to 20, learning to draw shapes, and even learning to sight read! Today him and Michael were playing together and getting along. It was such a great thing to see. I often dream about my boys playing together. Except, most of the time it is just that...a dream. In my dreams Nick talks, plays, and runs around like any little boy should. He is not restricted by anything. I see them chasing each other with Nerf guns and laughing. Then the dream is over, and I wake up to reality. Except today, my dream WAS a reality. For that, I am thankful. I am also thankful to have had another year with two amazing kids and a wonderful husband. Happy New Year!! I hope 2010 brings everyone love, health, and happiness.

Pictures from a wonderful day!!

And for the first time Nick actually opened his presents on his own! It was also a day with no fighting...that was very shortlived. They were back to their usual antics this morning.

Merry Christmas Everyone!!

I cannot believe how fast this year has flown by! We have been busy little elves this week. Filling our days with lounging around, staying up late, and lots of family bonding time. Nicholas has dicovered the joys of emptying out all the dresser drawers when he gets upset--hence the lots of family bonding time spent re-folding clothes. We managed to get to the park this week once. And we have also enjoyed running errands and chatting with our neighbors. Our Christmas present to ourselves tomorrow: 2 newly installed baby gates. The fancy schmancy kind. These buggers are drilled into the walls. No prying down the gate by determined five year old hands. All closets are essentially blocked off. Our house is becoming increasingly locked up. We have locks on the washer and dryer, and window locks. Coupled with all the baby gates, no one can get IN or OUT for that matter. Which, is just how we like it.

Needless to say, the holiday break has thrown Nick a little out of whack. I now know how people can claim "temporary insanity". I now know how it feels. Spending any length of time with a 5yr old having numerous meltdowns a day will do that to a person. I had to go to the post office today...don't ask me how I got there...I think I was borderline delirious. I was so out of it that I even took with me the cause of my mental fog. Nick. He was in fine form in the constraints of his "smallish" umbrella stroller. His feet drug on the pavement so I had to *wheely* him all the way back to the car; as he refused to put his feet up. Yes, I dug out the stroller from the abyss of the shed. A mama has to keep her sanity. If I had not used it, surely there would have been a huge line at the post office, Nick would have had a meltdown and socked some poor soul in the back or rear, he would have been trying to escape out to the parking lot, and I did not want to revisit any of our numerous outings in which we were ill prepared(Safeway, DMV, his old school, etc.) Of course, he was a perfect little angel during this trip.

The holiday break did spark a little creative side of me though. One night I was able to come up with our very own version of the "12 Days of Christmas". Enjoy.

12 Days of Christmas

On the first day of Christmas my autie son gave to me:
ONE broken coffee pot
On the second day of Christmas my autie son gave to me:
TWO busy therapists
On the third day of Christmas my autie son gave to me:
THREE huge meltdowns
On the fourth day of Christmas my autie son gave to me:
FOUR new holes in the wall
On the fifth day of Christmas my autie son gave to me:
FIVE whole words
On the sixth day of Christmas my autie son gave to me:
SIX broken closet doors
On the seventh day of Christmas my autie son gave to me:
SEVEN hours of screaming
On the eighth day of Christmas my autie son gave to me:
EIGHT burned out lights
On the ninth day of Christmas my autie son gave to me:
NINE days of tantrums
On the tenth day of Christmas my autie son gave to me:
TEN torn up window screens
On the eleventh day of Christmas my autie son gave to me:
ELEVEN broken cabinets
On the twelvth day of Christmas my autie son gave to me:
TWELVE lovely smiles

Doors....

What is it with Nick and Doors??!! Seriously. We have numerous doors that are either cracked or falling off their hinges. Trying to keep him from doing this is a herculean effort. Every fricken room has at least two doors (closet door and entry door), with the kitchen and bathrooms having even more with cabinets. This has been going on in earnest for over a month now. Leave. the effing. doors. alone! This has been the one thing lately that is literally driving me insane. We get done distracting him from one door, and he just moves on to another door somewhere else in the house. It is neverending. Doors are everywhere. They must be open. They must be closed. They must be slammed against the walls when you open them. Some have the added bonus of making unusual noises as they slam against the baseboard heaters. You can imagine what repeated slamming does to a door. If you can imagine that, then imagine what repeated slamming is doing to my sanity.

Home Again....

I am home again after another trip. This time I went to St. Louis for a 4-day class to learn a new computer program we are using at work. I got home around 8pm last night, and Mike had ordered a pizza. YAY!! After spending a week in the "flatlands", I was happy when we flew right by my Mt. Rainier. It stands majestically above all the clouds showing her snowy white top. It is beautiful to fly by,even in the dark. To me, when I see that volcano, it means that I am HOME. Back to my three guys, and back to a routine. It's funny how we think that people like Nick are the weird ones who are stuck on their routines. Doesn't your routine during the day provide you a little comfort? Are we not a little anxious when we are forced out of our "comfort zone"? I know I am. I am simply a nervous wreck on the inside until whatever it is passes. When I go somewhere on a trip, I like to get everything settled and put away in my room so it feels like I belong there. Nick, although a little more severe than most, likes to feel the same way. His routine is comforting and he likes knowing what to expect. One of the reasons we have a camper is so that he feels comfortable. Nick hated going to a different hotel room everynight when we traveled. He did not know what was where, or even where he would sleep. Seems silly to most of us, but for him this caused him great stress. He likes to know "the lay of the land". He LOVES our camper. He knows where he sleeps in there, where he eats all his meals, and where his toys are. So even though his routine may be interrupted by a camping trip, he is not stressing over a "new" place. Don't we all like the feel of a familiar place like our own homes? I know I do. For me, there is really no place like home.

Back to Normal.....Almost.

After 4 chaotic days of Thanksgiving break, we were looking forward to getting back to a normal schedule on Monday. But, as luck would have it, that did not happen. Mike had gotten Nick all dressed and groomed for school and they were waiting outside for the school bus. As I have said before, this is the absolute highlight of Nick's day. He LOVES the bus. So, when it did not arrive on Monday he was completely upset. Mike called the transportation people and inquired about the whereabouts of the bus. They said that it was a substitute driver and that they were here to pick up Nick around 10:45-10:50. Mike said that was not true because they had been waiting outside since 10:40. They said that they would send another bus to come get him, but by that time Mike was like "What's the point? He would only be in school for just over an hour." That threw off Nick's whole day. As he has gotten older, he is getting more rigid in his schedules. He likes them. It takes him a long time to recover from a schedule change. And until he does, he makes our lives a lot harder.

Tuesday was a little better. Nick went to school as planned. But, before he went to school, he managed to peel off part of the baseboard in the kids' bathroom. He also managed to peel off a layer of paint and more damage to the drywall underneath. Another door had also been taken off it's hinges. So, we called the housing office to have them repair our house. They came and fixed up the bathroom, and a couple of doors and screens. We still have several closet doors that are in dire need of repair. He just can't stop. We watch him constantly, and even his therapists are having a hard time keeping him away from doors. We are at our wits end with this. Then, just after we called the housing office for the repairs, we get a call asking if we want to move into another house on base. This *new* house is completely remodeled, and has a garage! YES! It is one-story, so we would not need to be worried about anyone falling down stairs, and it also has central heating. I remember central heating...how nice it was not to have to worry about anything burning up or melting if it is too close! We have had baseboard heating for 10 years now, and always have to check in the boys' room to make sure no toys, clothes, bed spreads, or anything touch the heater in the winter. Nick also won't have them to stand on. YAY us! We are scheduled to move in sometime in Jan.

This week-Nick ate bananas! What is even better is that he is now picking up his food with his hands! We are talking broccoli, chicken, bananas, pot roast, etc. He is eating all of it. He is also using a fork. It is just so good to see him picking up these things with his hands and feeding himself. He has really come a long way! Even better yet is he is now curious about what we are eating! Michael had a banana yesterday and Nick saw it. He proceeded to come into the kitchen screaming. We asked him if he wanted a banana, and if he wanted to eat. He went right to his chair and waited for it. I cut up half a banana and gave it to him. He dived right in and was happy. He is doing that more and more. He is getting frustrated at not having the words to express himself. We are working with him on this, and so are his therapists. One day we will hear what Nick wants.

Happy Thanksgiving!!

Just wanted to wish everyone a wonderful Thanksgiving. Hope you are enjoying your holiday with your families. The turkey is in the oven, I am baking a Gluten Free cake with Dairy Free frosting for dessert, and we are just relaxing as a family and enjoying each others' company. Have a wonderful day and safe travels.

Challenging Days....

After a week off milk, I was happy to report that Nick had improved in just about everything. His poops were finally normal--been waiting almost 6 yrs for that little gem. Then Saturday hit like a ton of bricks. Started out just like any other day and Nick was happy. We ate breakfast and got dressed. We went over to the neighbors house. We came home. That is where Happy Nick ended. He was replaced by pissed off Nick. In one instant while I was cooking his lunch, he got upset and launched his sippy cup. The cup flew in the direction of our espresso pot. The next thing I heard is glass shattering all over the floor and the counter. Nick just laughed at the commotion. I had had enough. I sent him to his room, although I don't think he understood why. The grocery store was no better. He threw a tantrum and started knocking things off the shelf and hitting me. I told him no the first two times. The third time I said no and pinched him on his cheek. It got his attention and he began to soothe himself by chomping/sucking on his thumb. By the time I got home, I was done. Needless to say I had about 2-3 servings of cookie dough ice cream that night. He has a fixation on doors again. He has broken the door on our laundry closet-it is completely off track and has a chunk of wood missing at the top. He has cracked one of our kitchen cabinets almost clean off. It is now held together with two nails. He has damaged a few other cabinets, but not as bad. Somedays I really feel that I just cannot take it anymore. The constant stimming, and just everything else that goes along with him. Then there are days like today...when he greets me at the door with a big smile on his face.

I bought some Pedia Sure at the store so that maybe Nick could get in some extra calories. The day after he had some, he was back to mushy stools. I looked at the package and it was lactose free and gluten free, but still contained some milk based ingredients. Guess I won't be buying that anymore. One day Nick, mommy will get it right!

Fall is here...

You know how I can tell? Not from the thousands of red,brown, and yellow leaves that have taken over our neighborhood; oh no. I can tell from the cold viruses that have taken up residence in our house. We have gone through 3/4 of a bottle of Children's Tylenol. Nick gets green goop everywhere. He gets the concept of blowing his nose, just not when there is a tissue in front of it. You can imagine what we end up with. It's not a pretty sight. Michael has made it through this week and I am glad to report that he has been headache free. Nick's nose is as red as a firetruck, and the area around his mouth and chin are raw from his constant rubbing. At least he is eating still.

Moving on to better news. We got a call from Maxim a couple of days ago. They are the company that provide us with all of Nick's services. Including respite care. For those who are not familiar with respite care, it is a system that provides parents of disabled children qualified people to watch their special needs children while the parents can go out and get a break. Our respite provider called this week offering us a chance to go out Saturday!! Holy Sh*T I am so excited!!! To go out with hubby to a movie and possibly even dinner! Do such things even exist anymore?? Going to cut this post short for now. Have to get Nick ready for school and run some errands myself.

I'm Home!!

Ok, so I finally got home last Tuesday afternoon from New Zealand. I had Wednesday off so that I could adjust back to the time difference(afterall, we were 20 hours ahead in New Zealand)and be with the boys. It has been a crazy week at work. I was working 12 hours through the weekend, and coming home just drained. Today is the first day that I have had off, so I thought I would update on Nick.

He is continuing to make huge progress with his ABA home programs. He has mastered gross motor imitation. Which was and still is, thrilling to see. It is exciting to witness him copy everything we do. Mike will pat his head, Nick pats his head, I wave, Nick waves, etc. It is spontaneous imitation-with no prompts, and appearing very natural. He can now answer some questions. For example, if I point to a shoe and say "What's that?" he can answer "Shoe". The same with car,nose,mouth,eyes,ears,hair,etc. He is grasping the whole Touch Math program seemingly easily.It seems like he can come out of his world easier now and join in ours when the time comes. We have much less "hand over hand" instruction, and he is often better at following directions than Michael LOL! The potty is a work in progress still, but we will get there. He likes to help with the laundry. So much so; that last week he took a closet full of clothes and dunked them in the toilet and sink. He has a thing for water and loves to play with the faucets. Bathtime however is still somewhat tricky. I can't tell if it is the louder noise of the running water, or the process itself that scares him. Maybe some others who read this can help shed some light? He used to love bathtime!

Another thing now is that his school is requiring him to get updated on his shots. I honestly cannot remember the last time he got a shot. I think his last one was right around two years old. I know it seems silly, but I am conflicted. I think I will get him his shots, but not all at once. That would be quite an assault on him. He needs DTP, Hep B, HiB, MMR,Polio, and Varicella. We will see what the day brings. Right now Nick is dressed and waiting for the school bus. He has helped me with the laundry this morning, and had two waffles for breakfast. He is my little "Bubby".

Almost Home....

I have been away on another 3 week trip for work; and am due to be home this Sunday. I have kept in touch with the guys back home via Skype, and it has been wonderful. Not as great as being there, but wonderful to say the least. I got to hear Nick hummm contently, sing a little song, and jump like a Mexican Jumping Bean in front of the tv. On one day I even got to talk to Tracy-one of his therapists who was there to work with Nick. The whole time I was talking to her, Nick was using her as a jungle gym. Don't let him fool you--he knows exactly what he is doing and when we are talking about him--he flashes that "knowing" glance, or looks right into your eyes and gives a huge grin. This time, as we were talking, Nick was standing against the door looking right at Tracy as she talked to me. One of these days, Nick will tell us what is in that grand mind of his.

You would think I relish being away from the whole world of autism. But, I miss it. I miss seeing the new things Nick has learned. I miss reading about his days in therapy, but most of all, I miss HIM. I miss my baby boy's smiles, humms, the occasional word, and his laughter. I miss seeing Michael and knowing how his day went, what homework he is doing, and all those other little things. I know this was not a long trip, but I hated leaving again so soon after I got home from Turkey. I miss you Michael and Nick!!! I miss you all terribly!! Mom will be home soon! Be good boys for Daddy!

Another week down....

Hey we made it through another week!! It is another typical Monday here in the Weger household. Yesterday I decided to venture into unknown territory. I have been thinking about this for a few weeks now, but decided to go for it yesterday. I have been slowly trying to reduce the amount of chemicals we use in our household. Our steam mop works wonders, and our floor gets clean without using harsh chemicals. We also save $$ by not buying floor cleaner. Now I am wanting to go even further and try to make our own laundry detergent. It is really very simple. All you need is some soap(any kind you like really), something to shave the soap into small pieces (like a cheese grater), Borax, water, and washing soda. 1 bar of soap can make 5 GALLONS of detergent! Later on, as we go through all of our store bought cleaners, I am just going to make my own instead of buying more.

So, Sunday I took both the boys with me on my quest to find all the ingredients. It ended up being a fiasco (really? That is Normal for us) because we had to go to multiple stores. The first was the BX. A certain aroma was emanating from a certain 5yr olds backside and apparently it smelled so bad that he himself was gagging. At first I thought "great, another phase of something he is doing to stim himself". Then I thought maybe something in the store was setting him off...because he did not do this in the car. And to be honest, he can smell up his room, and all it will be is gas. I thought this could be one of those times. Not so. I caught a good whif as I lifted him into the car after going to Target. We came home and promptly changed him.

Today, after everyone was at school, I went and found some Washing Soda by Arm & Hammer and went about detergent making. It was not hard at all. We grated some Irish Spring soap(it can be any type, we just had that lying around), and put that into 4 cups boiling water. I stirred in the little soap pieces until they were melted. In a 10 Gallon Rubbermaid Container, I mixed in 3 gallons of warm tap water, 1 cup of Washing Soda, and 1/2 cup of Borax. I stirred it around until it was all mixed together. Then I added our soap solution from the stove. You have to let it sit for 24 hours, then stir and use. We have it sitting in the container with the top on off to the side of our dining room. So far, it is still smelling like Irish Spring and it is starting to get a little more solid. If this goes well, we just made 3 GALLONS of detergent for an extremely low price! And as our store bought cleaners run out, we will be making all of those ourselves as well.

Cost of Having Autism...

This is a breakdown of our insurance bill for Nick from August 3rd-August 13th. That is ten days of therapy:

8/3: Consult with BCBA(Head tutor) $250.00
8/3: Tutor for 3 hours $150.00
8/3: Tutor for 2.5 hours $125.00
8/4: Tutor for 3 hours $150.00
8/4: Tutor for 2 hours $100.00
8/5: Tutor for 2.5 hours $125.00
8/5: Tutor for 2.5 hours $125.00
8/6: Tutor for 3 hours $150.00
8/6: Tutor for 2 hours $100.00
8/7: Tutor for 2.5 hours $125.00 (So far, we are up to $1,400.00)
8/10: Rehabilitative Services(another word for Tutor) $262.50
8/11: Rehabilitative Services $225.00
8/12: Rehabilitative Services $100.00
8/13: Rehabilitative Services $250.00 (that is another $837.50 for those four days)
That is a grand total of.........
$2,237.50 FOR TEN DAYS OF THERAPY Most insurances DO NOT cover AUTISM, so this is what would have to be paid by the FAMILIES. THIS is what it takes to raise a child with Autism.

Our New Routine....

School has been going for almost a week now, and both Michael and Nick are settling in to the routine. This morning I have a few minutes of peace before I wake up little man again. I say again because he was already up earlier; around 6:30. He was playing in the curtains hung on the window by Michael's bed. I told him frankly to get back to HIS bed and go Night Night. Michael wanted me to drive him to school today, and for some reason he was already up as well. And dressed. In the same clothes as he wore yesterday. I told him to go change clothes, and that he cannot wear the same stuff again. He looked at me like I was speaking a foreign language. Of course I was. Mommy is not speaking "Male", which unfortunately is the predominate language in our house. I come from planet "Female" and there we change clothes every day without thinking about it. Apparently, those from "Male" have to be reminded. They also have to be reminded to brush their teeth. After he got ready I went ahead and did some dishes and I took Michael to school. There he gets a free breakfast. Great. Another meal that I don't have to feed him. Saves on our cereal budget.

Little Man loves riding the school bus. He is getting to be such a big boy. He gets on the bus by himself, all I do is fasten him in. Yesterday he was so excited he could not contain himself. We were waiting outside for the bus and he was a stimmy mess. These were happy stims though. Lots of humming,flapping, hand twirling, and doing a modified happy dance on the lawn. I am so happy that he is in the right school now. They know how to handle him. It is a smaller class, so I know he is getting what he needs. Makes me mad though to think that we lost an entire year due to the stupid move that people who don't even know Nick made for him.

We had another meeting with all of Nick's home tutors yesterday as well. They are adding more programs as he is mastering the old ones pretty quickly. Diane told me that they just started on identifying numbers like 13,14,and 15, and that Nick was already able to ID them! We are now going to start him on the Touch Math as Ana now has all the materials, and also work on spelling some simple words and learning to recognize those words have meaning. He will also have a tutor come in the mornings to help him with basic skills like dressing himself and going through his morning routine. It helps to add in new stuff to keep him from getting bored. It is hard to describe how much he actually likes this. When his tutors first started coming here, he would run and hide in his room. They would have to carry him to his "work room". Yesterday, he went in there ahead of Diane and was ready to do stuff. Ms Tracy not only got a "hi Twacy", but a hug as well. He gets cheeky with them and now goes into their goody bags to see what they brought. For Nick, these are all the more people to play and interact with. He is progressing much faster than I ever thought he would. The daily sessions of ABA are much more helpful than just once a week. Nick is already doing more stuff now than he was at UW.

Back to School..

Today is the last day of summer vacation. It is back to school tomorrow morning for both our boys. We went and met with Nick's teacher this afternoon and he got to meet some of his other classmates. One of Nick's old speech teachers came in at the end and she was happy to see Nicholas again! To find people like her is a blessing. She was disheartened as we informed her of what happened the past school year. His teacher is really nice, although I am a little scared at the idea of Nick having "homework". They will be learning to write, numbers, shapes, and all the other things in kindergarten. Except that this will be more at their own pace and the program is tailored to SN(Special Needs) kids. Nick's therapists will also be working on the same material. There seemed to be a good mixture of kids, and he was not the lowest functioning one there. I can't help but get depressed when all the other kids are higher functioning, and then there is Nick-staring out of the window.

As far as preparing him for tomorrow... I have told him that he will ride on the school bus tomorrow and go to school. "Bus tomorrow" he replied. We took him with us to meet his teacher and play with all the new toys. Kindergarten. It does not seem like he is five years old. This is just a reminder that time is passing by. It seemed that as long as he was in 'pre-school' everything was ok. So, he still is not potty trained...he is just in pre-school. Now, he is in SCHOOL. By the end of kindergarten; Michael was able to read. We just hope Nick will be able to write his name by the end of the year. Things are different. Somedays it is almost like hearing his diagnosis all over again. The uncertainty of it all is almost too much to bear. Give up? No. Never. One day at a time. One small step at a time. One word at a time.

The Blanket

This blanket has been in our family for nearly 25 years. It was made by my grandmother for my brother in 1985. My brother then passed it on to Michael when he was born in 1999. Michael LOVED this blanket, and it has accompanied him on many trips to visit relatives(this blanket is WELL traveled!). He referred to it as "deedee". Well, "deedee" was passed on to Nicholas when Michael did not need it anymore. "Deedee" is still going strong. My grandmother would be surprised that a simple blanket she made in 1985 for my brother, is now providing comfort for her great-grandsons that she never got to meet. Nick does not sleep with this blanket very often, but on this particular night, he was needing comfort from a gentle and loving soul while he slept. Maybe it is her way of "knowing" them. I do know that our boys know her from those hand sewn stitches that made that blanket.

Can Nicholas "See" Numbers??

We are learning more and more of what Nick may actually know. It is astounding to say the least. Yesterday we were playing with one of his new placemats. It has colorful shapes on it, and I was asking him what shapes there were. I was flipping the mat over to the other side when he blurted out "eight". So, I counted the shapes on there. Sure enough, there are EIGHT of them. Yet, when I took his finger to count them individually, he had some trouble. Mike thinks it could be coincidental, but then again, this is a kid who is already saying phrases in Spanish and Chinese. Every day we are discovering some sort of hidden talent or knowledge he has. Today he told his tutor that "W is for Wagon!" I had never heard him say the word Wagon before. That is the funny thing about autism. Sometimes stuff just flows out without any effort,other times he can't get his words out for anything.

School supplies, cleaning, redecorating..Oh my!!

You know we have been busy when I do not update the blog for over a week!!LOL! We have been busy with doing a little end-of-summer cleaning. It is amazing how much stuff you accumulate in closets. Last weekend our project was to clean out our bedroom closets. They desperately needed it. I must say, it felt good to get rid of all that "extra" stuff, and now be able to actually see what is in the closets..LOL! We also did a little redecorating around the house. The boys got new bedding and a curtain for their room, and we put curtains in our room, the living room, and the kitchen. For their bedding, Nick picked out SpongeBob. In other words, he looked at the package and let out a huge giggle at SpongeBobs face! Michael went with the camouflage motif.

Also on tap for last weekend was getting school supplies. I feel that we basically gave my paycheck to Wal-Mart with all the $$$ we spent in there. It was insane, but all for a good cause.

Nicholas is progressing very well in his therapy! I can't believe all the stuff he can identify now! Last week he brought us a picture book and identified every picture-with a point! We were freaking amazed!! We have been waiting YEARS for a simple "cat!, duck!, car!" and last Wednesday we got it! He can also name shirt, pants, Jingles, shoes, among others.

I am very tired, so I think I will cut this post short. Just wanted to give an update. More to follow later.

Touch Math....

We spoke with Nick's tutors yesterday and discussed adding some new programs. He is doing well with recognizing letters and numbers, identifying clothing, and is also engaging in more social behaviors. We have found out that Nick likes to be challenged. His tutors will be doing letters with him and then all of a sudden switch to numbers. He doesn't get them right every time, but he recognizes that those are numbers and not letters. In the interest of teaching him that numbers have meaning, and also to keep him from getting bored, we discussed adding a relatively new program called Touch Math. You can go to their website HERE and check them out. It is pretty neat and we are excited to start it with Nick.

Today was a good day for him. His fave tutor came to see him. I think he has a little crush on "Tefanie". He likes to run his hand over her long blonde hair and just loves to say her name over and over. It is really quite cute. He likes all of them, but she seems to be his favorite. He always says her name very softly. Right now he is having a blast blowing raspberries,silly talking, and gathering all his flashcards together.

Escape Artist

This week was just plain crazy. It all started on Tuesday evening when I came home around 7pm. I pulled up the driveway and found a shoe propped in the front door. I came in and immediately asked Mike where Nick was. He said that he was in our bedroom with Michael. I said "Well, there is a shoe outside" and Mike answered "We were outside for a little bit today". He made his way back to the bedroom and I heard those dreaded words "Michael, where's Nicholas?!" and then "I don't know." We immediately began our search through the house. Bedrooms...Nope. Bathrooms....Nope. Livingroom & Kitchen....Nope. Backyard....Nope. No Nicholas. Now panic sets in. Where is he??!!Our only clue brings us back to the shoe propped in the doorway; he is somewhere out front. Wandering the neighborhood. He sees no danger in that; he just wants to be outside. Michael goes outside while I am still trying to fathom where Nick could be by now, and I hear the glorious words "There he is!" Nick was wandering around across the street in some other peoples yard. In just a diaper and t-shirt of course. And surely baffling the two ladies talking just a few feet from him. With Nick now safely home, our minds wander to all of the horrendous outcomes that could have happened. The main one being hit by a car. Nick has become very stealthy in escaping. He opens the door slowly, props it open with a shoe, and then closes it slowly. When I leave the house in the morning, I put up a baby gate in the hallway, so he only has his room and our room to go into. Nick has also tried to climb out his window. Yesterday our neighbor saw him getting his leg out his window and told her hubby (she was in her car, getting ready to leave) to tell Mike that Nick was escaping. Last night she came to me and expressed her concerns over otherwise well meaning people who don't know his condition, calling the cops. She knows we do everything we can, and that you can't possibly watch him every second. But she was afraid of CPS getting involved if that happened. It is becoming more difficult as he gets older and is more curious about things. Nick was never this adventurous before. We put the gate at the front door to prevent him from going out, but have not found a deterrent for his window yet. Fortunately he prefers to take the easy way out, so the door is preferred method.

He is also going through another hoarding phase. He will hoard food in his mouth for hours. Chewing it so much that it is nearly liquified. We are really baffled by this. It is very frustrating and takes an hour or more just to get a few bites in. Just one of those things that is very difficult to understand. Needless to say, our week has been challenging. We are finding out more and more of what Nick can do; and it is amazing to say the least. He apparently is learning spanish from his toys and even some chinese from TV. No kidding he has said words in both languages. One time at the store a chinese woman turned and said "He knows Chinese??!!" If she understood him, then apparently he can speak a little of it. My jaw hit the floor. He is also understanding some basic math. Iam talking very basic here, but shocking finding out what he really does know. He had four plastic toys strung together, he grabbed another one attached it, and said "Five!" It truly is amazing that with all his difficulties, he can pick up some of the hardest things easily. If there is a pattern to it, Nick will get it almost instantly. It definitely explains his love of letters, numbers, music, and there is even a pattern in foreign languages-and they have an added bonus of being sing-song like. He is even amazing his therapists. Of course I have to give them credit for his progress as well. He is constantly getting pulled from stimming and retreating while they are here. His tutors have done wonders. He has learned more this summer and made more progress in a few weeks than he did in his whole last year at school.

In other news, we are considering buying a house here while the market is so low. We have a few houses in mind and we are going to look at them today. In fact, I need to go so I can get myself and the boys ready. Have a great day everyone!!

E is for EVERGREEN!

We found out today that Nick will be going back to Evergreen Elementary School for kindergarten next year! I was so happy that I did my own Happy Dance!! He was much happier at Evergreen and they knew him so well. He will be in afternoon kindergarten this year. My mind is at ease right now knowing that he will be getting exactly what he needs and will not be completely separated from the other kids in the school. He can go out to play, and they will likely only have a few kids in the class, it should also be easier for him to have his aide in the classroom with him. I wish Michael could go there, but he only has one more year until middle school anyway unless we decide to hold him back for grades.

Nicholas did pretty good today in his afternoon therapy. The 1st session was a little difficult, but the screaming has definitely slowed down a bit. He is breezing through his programs and showing everyone just how smart he really is.

The oldest boys are watching a movie tonight-so right now the house is just kinda quiet with me and Nick here. Nick has had dinner already, and I am going to relax and watch tv tonight.

Potty Training

This week we kinda just sprung it on Nick that he is DONE with diapers during the day. I went out and bought a whole bunch of those training underwear at Target; not Pull-Ups, those are just like another diaper and I want to be rid of diapers during the daytime; but actual underwear with a little more padding in the front for accidents. I put those on him after his morning diaper change, and we are going to the potty all day. I have to remind him every so often, and so far, we have only had about three true accidents. Most of those were my fault as I did not remind him for a while. But today was his first day wearing actual shorts over his undies. We went for a walk, and talked with the neighbors for a while. I told him "Nick it's time to go potty, let's go." And he gets right up, heads to the bathroom, turns on the light, takes his pants down(sometimes I have to remind him) and sits his little bony bum on the toilet. Sometimes he pees, sometimes not, but we are getting there. He is ready. He understands what we say to him, and he likes the feel of the undies vs. the diaper. He still wears a diaper at night for obvious reasons, but I don't care so much about that right now.

Tomorrow is my first day back at work and I am already dreading it. I have thoroughly enjoyed spending time with my boys. They are both so very wonderful in their own ways. Sure, they have their moments, but for the most part they are good boys. Wish Mike luck tomorrow morning when Nick realizes I am not here. He is going to need it.